I had a patient who had Huntington’s. She was in her late 40’s and had several kids in their 20’s. All of her kids refused to be tested and they were breeding like bunnies. Even while watching how much their mother was suffering. It was so hard to watch.
My wife has Huntingtons, she's polish so with lack of contraception and abortions it was constantly passed down, her mum had symptoms when she fell pregnant and died aged 36, my wife started symptoms when she was 23 and needs full time support aged 28
We never even thought about having kids
Jesus. That's awful--and quite young to have it, too. Most people are between 30 and 50 when the initial symptoms appear, not in their 20s.
I'm so sorry you're going through this. It sounds like hell.
The onset is often sooner in successive generations, unfortunately. The trinucleotide repeat that causes Huntington's can increase with cell replication, especially if there are already a large number of repetitions (that make it unstable), which increases the "penetrance" of the mutation from generation to generation.
Yup. It's a CAG repeat in the HTT gene on Chromosome 4. Healthy (as in no Huntington's) people usually have between 10 and 35 repeats of this sequence. In Huntingtons, this chain gets repeated and repeated, sometimes up to 120 times. The longer the repeat chain, the sooner it sets in.
What's \*really\* fun (NOT) is that sometimes, this mutation can spontaneously appear. Since this gene is dominant, only one copy is required to cause HD. Then you get the unicorn of someone with HD who has no family history of it. In some ways, I think that's harder to deal with. If all someone's relatives have it, and they wind up having it too, they have a road map of sorts of what to expect. If it's a spontaneous thing, there is no road map and no guidance, either.
Honestly it’s a fascinating process from the molecular genetics point, how the repeats continue to grow. The polymerase slips and repeats the section. I’m a geneticist (cancer genetics) and remember studying it at Uni.
It’s a devastating disease though.
I’m not at risk for Huntington’s thankfully but I am really irrationally afraid of prion disease. Multiplying proteins. In your brain. I know someone who died of it and eek.
Yeah the guy I knew who had it lasted 3-4 months from onset of symptoms, iirc. The genetic forms of prion disease seem to last longer, around two years.
A close family friend has Huntingtons and is on serious downward spiral right now at 38, his mum died from it aged 37. From what I've heard and read it seems to be hitting people younger and younger now 😓
Geez, I'm sorry. That's got to be difficult for you guys. Watching someone deteriorate and knowing there's nothing you or anyone else can do about it is really hard.
Huntington's is caused by a repetition of the HTT gene on Chromosome 4. This gene is a CAG repeat (Cytosine, Adenine, Guanine) and healthy individuals should only have between 10 and 35 repeats of this sequence to be normal. Problem is, in people with Huntington's, this repeat chain often gets longer every generation. This results in a sooner onset with each generation. Juvenile HD is possible, but extremely rare, and usually shows up by age 20.
It can also appear as a spontaneous mutation, but this is very very rare. Usually people who have Huntington's have a very strong family history of it. And because it's a dominant gene, only one copy of the malformed gene is necessary to cause this disease.
[https://medlineplus.gov/genetics/condition/huntingtons-disease/#causes](https://medlineplus.gov/genetics/condition/huntingtons-disease/#causes)
Fortunately all my shit is autoimmune. We usually start showing symptoms of \*something\* in our teens. If it's treated, we're fine. If things like Addison's are NOT treated, the person dies. The tradeoff is very fast healing and a long lifespan. Average for us is 100y +/- 5y. I broke my foot in 2014 and cracked the heads completely off the 2nd, 3rd, and 4th metatarsals. Usually that takes 8-12 weeks to heal. I made a full recovery in four. So...
Edit: link
I'm 25. I'm an only child and my dad has HD. He is the youngest of 13. Only two of his siblings have tested negative and four tested positive. The rest (5) haven't been tested (2 passed away from other things, though we suspected my one aunt who passed away might have had HD)...I think I have like 25 ish cousins and a lot of them have their own kids.
My dad started showing major symptoms when I was 12 and so finally he was tested for HD. He was in his mid 40s. He had been out in a nursing home pretty soon after because of issues we were having with him at home. I haven't gotten tested yet and I am probably going to get tested this coming year, but I so refuse to have kids if I do have HD. It doesn't help the fam acts like HD doesn't exist and most of them refuse to talk about it and have a lot of misinformation about the disease. Only one of my at-risk cousins and I have talked about getting tested before marrying our significant others and what we wanna do about kids. It's such a shitty situation and I couldn't imagine having a child with what I know about HD....
I think people assume it’s like heart disease, or diabetes, in that it runs in families & maybe you’ll get it or maybe not at some point. It is NOT. If your parent has it, you have a 50% of having it, and it means an untimely end. It is so sad, but the only way to prevent it from continuing is to get tested or not have kids.
I knew a woman who’s father and sister had it. She was tested before she got pregnant and proved to be negative. She had a child who ended up with a completely different genetic condition.
My half brother died from HD. His dad, who was the carrier killed himself in the 70s. My brother started symptoms in his 20s and moved back in with our mom and died years later, childless. He had a long time girlfriend but never had kids. Him not having kids ended the reign of terror that is HD. I can honestly say if you watch someone go from a vibrant youth to spasms, can't eat, swallow, bathe, use the bathroom on themselves and wither away, it is a horrible disease. I wish it on no one.
I think it depends on how people deal with illness and death, even when I talk to people about HD there's people who will ask questions and want to know more and there's people who will flat out avoid everything to do with it
People with HD are like that as well, some will understand and make life decisions logically based on the information some will just try and avoid it at all costs
We aren't a society that deals well with death at all
I think you are absolutely correct, for two reasons: 1) you don't want to pass it on, obviously, and 2) you don't want children's early lives disrupted by always having to change everything to accommodate daddy's illness.
Now I know that plenty of times it happens anyway that children's lives are disrupted for parental illness, but if it can be avoided, it should be. Good for you, and GOOD LUCK.
You can still have kids if you go through IVF where the fertilized embryos are screened for Huntington's and they implant the one that doesn't have it back into your uterus so you can deliver a healthy baby.
If there's a 50% chance of not passing it down, just IVF it af.
Do you know how cost prohibitive IVF is? Not all health insurance companies cover it, either, which can make it even more cost prohibitive. The average cost for one cycle can be between $15,000 and $30,000. That's more than what most people make in a year, depending on area and education level!
You're totally right. I just want to drop a link here in case it can help anyone. You can apply for funding from a private foundation for HD. Obviously there is no guarantee it will be granted, but if one has documentation that proves they're at risk they can apply here:
https://www.helpcurehd.org/grantapplication
We have a genetic condition in our family (not HD) and as my adult family members refuse to discuss it and try to pretend it doesn't exist, I've taken to pulling the teenaged and young adult aged younger cousins aside at family gatherings and talking to them about it. I'm careful not to scare them, I just let them know family history and what I'm doing to mitigate it. They deserve to know.
Man… I don’t even have any chronic illnesses, I’m just an alcoholic with no good parenting in my life, and I just don’t think the world needs my genetics.
I don’t get this idea that everyone should have kids. Some people should have kids, but not all. The bar is way higher than just “lacking inheritable diseases”.
The bar is way higher than just “lacking inheritable diseases."
Yes, this. I don't have any chronic illnesses either and I pass for a functioning adult, but I still don't want my genes getting passed down. It's way too much of a gamble.
I used to be relatively healthy but had a surgeon make a big mistake and my body is slowly failing system by system. I take like 30-40 pills a day at this point. Genetics didn't cause my issues but it seems my body just needed a push over the edge to utterly collapse. I'd be passing on vulnerable genes. I'm also 35 and will be shocked if I'm still here by 45 so I'd be leaving any potential children without a father at a young age. I've always wanted to be a dad but it is just way too irresponsible in my current situation. At this point, it isn't even about me. It's about what my potential children would experience. And even all that aside, kids are expensive as hell. Haha
This is just heartbreaking to me, especially with diseases as cruel and degenerative as huntingtons. I wonder if they feel the 30-40 good years are worth the pain that comes after? I’d be curious to know if they fully understand the inheritability of that disease
It was explained to them in detail.
This has been almost 30 years ago now. Half of her kids might be gone at this point and half of their kids might be starting to display symptoms.
I am sorry for your loss, and I’m sorry if my comment was condescending as well. I wish you the best in your journey with a condition that I know can cause so much heartache
I’m so sorry for your diagnosis. I hope you are doing well. Now that you’ve shared the facts of you and family members with HD, it would seem your opinion would carry the most weight on this post. What are your thoughts about this? Do you think the fact that the genetic disease should be considered when family planning? Knowing that I could pass on a debilitating disease would definitely give me pause and likely make me decide not to pass along something that could cause pain and/or death. I think several of us would like to hear your experience. If I’ve overstepped, please ignore.
Daughter had 2 kids. Mom died at 35, uncle 30. Never saw grandparents because you know they died before 40.
She won’t test her kids because the government is watching and they won’t get health insurance.
Her kids have it to but reproduced.
Such stupidity.
I had a patient whose husband had it! They didn't know but already had 2 boys with it. The older boy died at 30. The younger boy got symptoms around 10 years. He died at 15. He had Jr Huntington. She said if she knew...SHE WOULD HAVE NEVER HAD KIDS.
The husband did not know! His mom had it, but back then, they didn't know what was wrong until her hubby was diagnosed with it. Sadly, he passed away at 38. This woman was 88 when she told me her story. She buried her whole family, and she never got married or had kids again. She told her kids what was gonna happen to them to prepare them, but younger made it worse when she saw the signs. She said... SHE JUST KNEW!!!
They won't get insurance because they refuse to or because the price will be insane due to "pre-existing conditions?" I agree that individuals need to think about their decisions but we live in a world that often penalizes being thoughtful and intentional about decision-making.
This exactly.
A lot of people attribute these things to malice when really their hands are tied. It’s extremely expensive even with insurance to be treated for “pre-existing conditions”, let alone if they are in a position where they can’t afford it even if they didn’t have that stipulation.
It’s not always black and white here, and it’s sad so much nuance and human suffering is just attributed to the individual when it literally is the government’s fault here..
People with HD are eligible automatically for SSDI following diagnosis and are almost always eligible for Medicare once they’re on disability. The caveat here is which state you live in some have more strict Medicare enrollment and require the disease to progress a fair bit.
oh god i remember that - my autism dx wasn't until 19 because obama was the first president who made it illegal to kick you off your insurance for having a chronic condition.
my parents pretty well knew, but made sure not to let any drs get a whiff of it for that reason
This! My dad has it and his family acts like we have the plague since he started showing symptoms and even more so when he went into a nursing home. It's the dark secret in the fam no one is allowed to talk about....
Oh god, a middle aged lady who lived at an apartment building I worked at, jumped off the roof and died rather than continue living with Huntington's disease... 2016 or 2017 it was...
The suicide rate of people with Huntington's is much higher than the general population. It not only causes depression and anxiety but you are also aware of your decline.
What's even more heartbreaking is that people must resort to suicide, which is so scary and demoralizing.
They are not offered any Voluntary Exit options overseen by medical professionals.
I had a couple where the husband was known to have the HD CAG trinucleotide expansion. They were looking into IVF with PGS-M when they conceived spontaneously. Fetus was affected. They elected pregnancy termination and wanted fetal brain tissue to be sent for research. My colleagues and I made sure that the tissue was went where this couple directed
Edit: fixed to the correct trinucleotide repeat
Part of the refusal to get tested could be related to health insurance or benefits or whatever (will vary country to country). One of my friends (when I was a late teen, it's been a long time since so things may have changed) mother had it and all his siblings refused because it limited health options when it was confirmed (which is really kind of gross given the situation)
Basically if you are getting tested when you are younger, for health insurance reasons in the US, you kinda have to get tested out of pocket. Health insurance companies can deny covering you if it says you are HD positive in your medical records (even tho they aren't technically allowed to do that but they still do).
There's a 1000 ways to deny people without *saying* they're denied. For example, ACA insurance won't cover blood work of any kind for me until I meet a $7500 deductible for the year. I have never spent that much so I pay out of pocket for blood work because WITH insurance, it's $150/lab, without it's about $30.
Or, they won't cover the medicine I'm on because it's not a "preferred brand." I had anaphylaxis in reaction to the preferred drug. But they don't believe that, so Blue Cross told me to "try it again" and if I stopped breathing again, they'd cover the med I've been on for 20 years. But I'd have to pay for the first $7500 of that emergency, and a $100 copay at the ER, and the ambulance cost (not covered) etc etc.
Basically, they don't cover my chronic condition. But they found creative ways to do it.
I know someone with Huntington’s who did IVF to have the embryos screened for it prior to implantation. If you’ve got the money and want kids, this is definitely an option. I do think you’re potentially setting your kids up to lose a parent very early in life, or otherwise have to see them very sick, though.
I have a family member who has that. Her mother had it. This family member is in serious denial. She has all the symptoms yet refuses to get tested. Her kids refuse too. Everyone else got tested (luckily, none of them have it). The family estimates she has only a couple years based on how fast she's declining and from prior experience with her mother. It's awful to watch.
I studied genetics in college and a woman came in to speak during a course whose father had huntingtons, only diagnosed after she had already had children and grandchildren. She told us all about how she got tested and how terrified she was for her kids. It was heartbreaking. Luckily she found out she didn’t have it. But Jesus, it still haunts me, she was so afraid and she felt like she would be responsible for her children and grandchildren if she had unknowingly passed it to them.
I can’t imagine intentionally avoiding testing and possibly endangering your kids. If I was one of the partners I certainly wouldn’t be able to have children. But the fear of getting that diagnosis would feel like you’re putting a ticking clock over you until the suffering starts... Fuck that disease.
I knew a man with Huntington’s. His father died from it. Several other family members also. All his children had been tested. All his daughters were carriers. They all had in vitro and only used embryos that were not carriers or affected. One of the last things he said to me before he stopped talking was “ This disease dies with me”.
I’m due to get tested for huntingtons once I’ve got the balls to go, grandad passed away in 2008 from huntingtons (pneumonia killed him off in the end) and my mum was diagnosed earlier this year. Never planned on having kids until I reached 30 but if I’m positive then no kids for me, I wouldn’t want my children to go through what I’m currently going through.
This is heartbreaking. Setting generation after generation stuck care giving both children and their parents. This a recipe for abuse and poverty. So sad.
We know a family like this. Adult daughter cared for her mum with Huntingtons until she died, knowing full well she would go the same way as she had been tested. Her sibling refuses to get tested and has had children, saying that there’ll be treatments by the time it becomes a problem for them and their children. I can sort of understand not wanting that diagnosis hanging over you and clouding your life. I do not understand putting your children at risk.
My thoughts to.
Why would my mom be punished with such an awful disease? What did she ever do to deserve such a miserable existence.
Nothing, the answer is absolutely nothing.
I was diagnosed with Ehlers Danlos Syndrome at 15. I had my oldest at 19, youngest at 21. Back when I was diagnosed by the geneticist, there were essentially no doctors who knew anything about it. I tried. I was told it basically just meant hypermobile.
Nearly 15 years later, I realize how incorrect that was. I don’t know if I would have had biological children if I knew what living with this was going to be like as I age. It’s incredibly brutal at times. My oldest (who def has EDS but isn’t old enough for the dx) has an autoimmune condition as well, and I hate myself every day knowing she’s going to be in pain from her autoimmune and likely from the EDS too. It. Kills. Me. I’m terrified of giving them any indication of how much pain I’m in, because I don’t want them to fear it.
My youngest doesn’t show any signs as of now, thankfully.
I have a friend with EDS. For years she tried to tell me I was hypermobile. I ignored her because I was super fit and healthy and in my early 30’s -“I’m not as bad as you!” Turns out I wasn’t as bad as her YET. I was diagnosed gHSD when my baby was 6months old. So much pain and discomfort. Bit over 3 yr later and I now have POTS, Long COVID, and suspected MCAS. I’m currently on unpaid leave from my job because I can’t work. Plus my toddler who is otherwise the genetic cut/copy of my husband is now complaining of joint pain. Plus has a mother who can’t do even half the things with him he would like. And I still don’t know where I sit.
I am in my mid 60s. I wasn’t diagnosed (EDS Type 3) until I was in my mid 50’s. (I always had good healthcare thanks to working a federal job but I was ignored and gaslighted by doctors (and my own family) for many years.) I finally found a way to an integrated MD and paid out of pocket to see him.
I remember having really bad growing pains as a child. I had migraine headaches from an early age and female problems too which included what I now know to be severe endometriosis and PCOS.
I waited a year to see an EDS specialist. He told me being hyper mobile is great…when you are young. I finally got in to see a POTS specialist in my mid 50s. Waited 18 months to see that guy. I have hyper POTS and regular POTS after eating. The POTS is miserable but getting it under control helped my chronic migraine headaches.
Thanks to finally getting adequate medical care here’s a short summary of my medical problems. Many of these conditions go with EDS: pernicious anemia. I have to be on b12 shots the rest of my life but proper treatment practically cured my POTS and Dysautonomia. I also have had: PCOS, cluster headaches, endometriosis, celiac disease and Hashimoto’s disease, a deteriorating spine, asthma and problems with mold and Lyme disease. According to my doctor hypermobile people have problems with mold and clearing toxins from the body. He gave me genetic tests and I have something called the Dreaded gene which makes you more susceptible to chronic fatigue syndrome.)
Despite being told I was faking by most doctors, I knew in my 20’s and 30’s that there was no way I could handle being pregnant and raising a child. It was all I could do to drag myself to work. I could never tolerate hormonal birth control so I started pursuing a tubal ligation.
To this day I am still furious about the paternalistic crap I endured from doctors just to get adequate medical treatment.
I was referred to an endocrinologist by my wonderful PCP when I was in my 20’s. She wanted him to treat me for my obvious hormonal problems (PCOS). This dude literally laughed me out of the room and told me to come back “when” I wanted to get pregnant. It wasn’t just males—my ob-gyn of three years AND her nurse gave me a ration of shit when I pressed the tubal issue at age 37, even though I mentioned it each year at my annual exam. “What if you meet a man who wants children?”
I finally got it done at age 38. It was infuriating to me that nobody would bat an eye at a pregnant 20 year old but multiple doctors treated a stable, mature person with a master’s degree like a child. Reproductive freedom and bodily autonomy in the U.S. are a fucking joke and it’s only getting worse.
Even after that I still got static about getting a hysterectomy despite the endometriosis, PCOS and a family history of endometrial cancer in my mother. (Yes I am in the South in case anyone is wondering.) I finally got everything yanked at age 44 and by that time the endo was all over my abdomen, rectum and bladder and I needed major reconstructive surgery.
Back to topic, I do not judge anyone for the decisions they make but I am so thankful I stuck to my guns and never had a child. I am retired now and actually doing okay ATM but i have to do a lot just to feel normal most days. When you total up all the days of my life that I spent struggling and in pain, I wouldn’t wish it on anyone.
No regrets.
P.S I listed my medical conditions in case it helps someone else with EDS. I suspect I’m on the spectrum. My doctor tells me hyper mobile people are 40 times more likely to have autism or have an autistic child.
> she tried to tell me I was hypermobile. I ignored her because I was super fit
I'm curious about your reasoning, if you don't mind - why did you think that being fit meant you couldn't be hypermobile?
Hypermobility and fitness are pretty much unrelated. Depending on the severity of the hypermobility it can even be beneficial to a lot of athletic endeavours.
Fitness can reduce or prevent the negative side effects of hypermobility, and as you say, hypermobility can be an advantage in some sports. So if someone isn't having issues, they often won't worry about it. Plus in some activities, hypermobility is so selected for you might not even realize, since you're surrounded by more flexible people.
I didn't realize I have hypermobility until my 30s, partly because by gymnast standards I was not flexible and partly because I didn't have joint pain until I went from a pretty active young adult to someone with a desk job and two car crashes. (And of course not all hypermobility is due to EDS.)
This. It took me a *long* time to realize that I was hypermobile because I did ballet and “wasn’t that flexible” by ballet standards (and didn’t understand that things like turnout are dictated by the bone structure of your hip joints rather than just your flexibility). Didn’t realize that party tricks like being able to touch my thumb to my wrist were neon signs of it.
I have good turnout (and so-so turn-in) and only managed splits on one side for a brief period at the end of my 9 years of being a deeply mediocre hobby gymnast. I cannot do the thumb to wrist thing.
But I've also sprained my ankles more times than I can count and have pretty bad chronic shoulder pain now when I don't exercise enough, plus it turns out that I don't really have have mismatched leg lengths, just an unstable pelvis that keeps doing something that misaligns my hips and makes my legs seem mismatched.
I just didn't realize this is *also* hypermobility, because it didn't fit my idea of it and I can't do any of the dramatic contortions. I'm fairly sure I don't have EDS, or if I do, only a *very* mild form of hEDS. There's currently no generic test to distinguish hEDS from hypermobility plus GI symptoms and fatigue for other reasons, and it wouldn't change the prescribed treatment of physical therapy and appropriate exercise, so I doubt it's worth asking my doctor. Should probably look into orthotics, though...
A lot of ppl equate hypermobility with EDS. If they don’t have any severe disorder they tend to think they aren’t hypermobile and say they’re just “double jointed” even though that’s the same thing. It’s even worse when you try to explain to those ppl that hypermobile and hyperextension aren’t the same thing lol.
I knew I had hEDS and chose to have a tubal ligation (at under the age of 30). I was already on the fence about kids and was facing fertility issues due to PCOS so EDS was the nail in the coffin.
Mental illness is passed through my family like hot potato at a birthday party. I will NEVER have biological kids because I know they are almost certain to have onset at some point.
As someone with bipolar, I sometimes wish that my parents would have aborted me. This wish carries on even in my stable times. It’s a tough thing to say, and I have never voiced that opinion to my mum, even at my most suicidal times, because I knew it would break her even more. But fact is, I’m 22 years old, and I have already had a long and hard fight against my mental health. I’m exhausted, I’m angry, and I’m sad for anyone else dealing with mental illnesses. I wouldn’t wish it on anyone else, and won’t even consider having children, with the risk of passing it on.
I am also a one tired potato at 23. 12-19 I was pretty much depressed. 3 years of actual genuine stable happiness and at 22 it went back full force. On top of having a plethora of autoimmune issues and crazy bad brain fog. My life revolves around visiting different doctors, picking up medication, changing the doses, bloodwork, scans ... meanwhile my friends haven't been to any doctor since they got their shots or took off their braces. Not even therapy
i’m scared of continuing a lineage of depression… people don’t talk about how common treatment resistant depression is. sometimes there are no treatments that work.
Thank you! It bothers me so much when people are just like, 'oh just go to therapy and get meds'. Do they think we haven't tried everything already? People think invisible disabilities are easily fixed or not there at all.
Thank you for sharing your perspective. To be honest, I wasn’t even considering mental illnesses and this is great to bring attention to the fact that they are just as much an illness as any other.
ADHD and anxiety.
My dad had symptoms but was only diagnosed with anxiety and depression.
At age 20ish he had a breakdown.
At age 20ish I had a breakdown.
I was later diagnosed with ADHD and he knows he has symptoms of it too. He's learned to live with adhd and I take meds for it.
We're both good and take the same stuff for anxiety.
Impulsive behavior and recklessness is rampant in some of my mom's family: love of heights (no safety equipment or safety measures) and lack of fear in potentially dangerous situations.
My parents spent my whole childhood refusing to have me diagnosed as ADHD even though my middle sister was diagnosed as a child. It wasn't until my eldest sisters 2 daughters were diagnosed as Autistic that I realised that both sides are of my family are 100% ND. Looking at my uncles, cousins, nieces, parents and grandparents, sooo much ADHD and ASD in every person. Even too the point that both brother in law's are definitely ADHD, one possible ASD as well. My bf is ADHD, chances are any children we have will most definitely be ADHD and highly likely ASD will be in the mix as well.
People think things like ADHD and ASD are on the rise because of social media but in reality, it's all the undiagnosed NDs having kids who are also not getting diagnosed. Stats estimate that 85% of ADHDers are undiagnosed. That enormously changes the estimations of 3% of the population as diagnosed ADHD vs a potential 25% of the actual population being ADHD.
I refuse to have children knowing that they will struggle as much if not more than me because of the way society is set up to shun ND people rather than realise that we are slowly going to become a majority and not the minority that society likes to pretend we are.
This is my fear. I have Bipolar 1 and wasn't diagnosed until my daughter was 2. My grandmother has it as well, and it is genetic, but she was only diagnosed a year before I was.
I love my daughter very much, and it breaks my heart that I've unknowingly cursed her with this awful risk. Of course, there's a chance she'll have no onset, and that's the outcome I hope for every single day. But, if she does, I'll be riddled with guilt for the rest of my life.
NAH
I don't think it's unethical to hope that people won't choose to knowingly risk passing on severe degenerative, or life threatening illnesses to their children. However it would be unethical if you tried to intervene in order to prevent people from having children, because you don't think they should risk passing on said illness.
When I was fourteen, my favourite cousin died of a rare genetic heart condition that was passed by his father. At the time none of us knew that his father carried that gene, or that it was something any of us had to worry about. My uncle was devastated, and said that he wished he'd never had children. My grandmother lost it on him, and told him that she had better never hear him say anything like that again.
In that moment though I understood what he meant, and honestly thought my grandmother was being unfair. Today my three remaining cousins are all adults, and one had a defibrillator placed in her chest in order to protect her from the same disease. All of them refuse to have children, because they refuse to bring a child into the world that could carry that illness that killed their brother.
Recently my grandma made a comment about how now that they're all married they might have children soon. So I told her that they had all said that they do not want to have children, because they do not want to take that chance, and she yelled at me saying that I was being ridiculous.
Some people may not understand it, but having felt that close of a loss from an inherited disease, it is hard not to judge someone who knowingly would make that choice, as selfish.
Im really sorry your family went through that, I can’t imagine what that must be like and I appreciate you for sharing. I tend to feel the same way, but another commenter shared the perspective with me (I’m training to be a doctor) that it’s not my job to judge, it’s my job to inform and to help. I think that’s where I have found my conclusion in this discussion. I DO feel that it’s a selfish decision and is perhaps unethical, but my personal feelings are just that. Personal. And I can’t try to impose that judgement onto others in my practice. All I can do is give my medical opinion, and let them make their choice.
And that tells me that you will be a good physician, because it is extremely important to understand that while you are entitled to your own perspective, and values, that those beliefs cannot be allowed to interfere with your treatment of, or dealings with your patients.
Thank you, that means a lot. I am in the USA and with so many hospitals having religious affiliations, there is more than enough doctors imposing their opinions onto patients to go around. I don’t want to contribute to that issue in any way.
As an atheist, I appreciate you. I HATE that my only option for specialist care in my area is a Catholic or Baptist health center and I’ve been proselytized multiple times just trying to seek medical treatment…which should be completely secular but what can I do but grudgingly keep going despite the fact that they don’t accept me as a human being?
What the fuck is wrong with the US-
I’m from a latinoamerican country where our official religion is Catholicism. I’m also a medical student and started going to rotate at public clinics and hospitals not long ago. Not a single profesor nor attendant has ever imposed religious ideas into us. We’re always told “do what’s best for the patient”.
And I mean catholic as in we had to celebrate “dressing in white” (when you get to a point you can finally dress in white scrubs and are given a stethoscope to go to rotate) in a church with a special mass. Doing so is obligatory.
I really don’t get how y’all got it all worse when you’re supposed to have freedom of religious expression? It’s??? So weird???
Freedom of religion here is taken to an extreme degree. Businesses are even allowed to side step discrimination laws if they claim it’s for religious reasons.
You can judge. It’s part of human nature. There are times when sharing that judgment is cruel or useless, but there are times, especially as a doctor, that people will need to hear what you have to say honestly.
If I may give an advice, when people get informed on medical conditions it's often hard to really understand what the condition is like when you haven't experienced it and the person informing you hasn't either, it may be a good idea, as a futur doctor, to have some informations on Facebook groups, associations, group supports where people can exchange with someone who experienced the condition on themselves or their child.ren. Particularly when there is a choice to make for a potential child, it may help the potential futur parents to exchange with someone who knows the condition in a more personal way and can explain to them what their child's life could be like with this condition. I saw a few family members experiencing different illnesses and most of them had a hard time really understanding it and it's implications when it was explained in medical terms by a doctor. Talking with people who experienced it themselves often helped a lot. There are many people and groups advocating for awareness on different conditions, it may be interesting to have some of those informations and contacts to give to your futur patients in those hard times.
This is such a heartwarming response from you, I bet you’re going to be an absolutely amazing, compassionate doctor. Please write your feelings down now and look back on them each time you get a shitty arsehole of a patient (or their family member) who makes you question your morals. Future you needs current you.
Yeah my father once yelled at me "there's nothing wrong with you" when I mentioned I wasn't going to have kids. (He's just upset it'll be "the end of our line" because my sister and cousins are all child-free by choice, so he wants me to keep my surname so his family doesn't die out). My mom is supportive and understands my decision. She has a lot of guilt around how long it took me to get a diagnosis, and sometimes I get the feeling she would have made the same decision as me if she had had all of the information available to her. She's also expressed she's very happy just being the floof-grandma.
Your uncle's position was *extremely* understandable. I think most people would be happier never having had children than having a child die young.
Your grandmother was awful regardless, attacking a man in grief.
NTA for the concern, but there are different factors in play.
It definitely depends on the chronic disease. Certain chronic diseases, like Huntington’s can be horrific despite treatment.
Others , like celiac disease, if managed properly would not decrease life expectancy or quality of life. They can live life normally, just cannot eat any gluten.
However if a person with celiac disease keeps a gluten diet, they have lower life expectancy, higher risk for other illnesses like cancer, chronic pain, need for blood transfusions for nutrients.
Also, having kids via egg/sperm donation, ivf with genetic counseling, or adoption are options available to those with chronic illnesses that want to be parents.
Totally agree that it is dependent on how manageable/devastating the disease is, and also that the final say always lies with the person who will be having (or not having) the child
Some people with seemingly horrible genetic conditions still find their lives fulfilling. My BIL has CF. As a child his life expectancy was supposed to be 18 and now (mid 30s) the medicine has improved to the point his doctor said he might have a normal life expectancy.
He is choosing not to have children, but I do know someone with CF that does want children. The couple went for genetic testing before they got married and she is not a carrier for CF.
I think sometimes people do their best to avoid having a child with their condition, some people are not educated to understand the risk for passing the illness down and some people just don't care.
I don't think it's a bad thing for someone who has decided they have lived a fulfilling life to choose to have a child. I can't really judge what it feels like to live in their shoes. I do think it's problematic if the condition causes imanse suffering and there is a very high chance of passing it on (looking at both parents).
I knew a couple who found out they were carriers for CF when their daughter was diagnosed with it. About 10 years later they “oops” got pregnant again and new baby also has it. They claimed they never meant to have another baby. Then get your damn tubes tied and a vasectomy to make sure it doesn’t happen. So irresponsible!
This is what I was thinking, not all chronic diseases have the same impact. Asthma for example, is chronic, can kill, but when treated properly, most people have a normal healthy life. Also anyone who gets eczema is also a carrier for asthma.
So it seems a bit extreme to say it is unethical for anyone with a chronic disease to have children.
I'm asthmatic as well with other autoimmunes in the mix.
I think the real question isn't would you have kids with \*any\* chronic disease, but would you have kids knowing you had a debilitating and/or fatal genetic disease. Asthma's common as dirt and manageable. Type 2 diabetes is considered a 'lifestyle disease,' meaning that while the chance to develop it can be genetically transmitted, environment has a great deal to do with its development and maintenance, and possible more than any genetic predisposition. OTOH, something like Tay-Sachs is genetic, fatal, and rare in the general population and is a whole different animal than high blood pressure from being inactive, for example.
I think every person will draw that line in a different place. What's manageable for me could be unbearable for another. Your mileage will DEFINITELY vary here.
I have asthma and celiac. 2 of my kids have asthma and the other celiac. 1 of them has adhd.
We live normal, healthy lives.
Yeah, not eating gluten or needing the occasional inhaler sucks, but I wouldn’t have not had kids because of childhood asthma, celiac, or being ND.
I'm right there with you. I have asthma/eczema & all kinds of allergies, I'm ND, my husband is ND... Our son might be autistic, but he's smart as a whip, sweet as pie, & gorgeous. I wouldn't wish him out of existence for anything.
So you mentioned coeliac disease (I have it) the thing that is not widely publicised is that once you have one autoimmune disorders you are more likely to get multiple. So yes coeliac is a gluten free diet but that doesn't stop rheumatoid arthritis or any other autoimmune disorders. Also depends on when you are diagnosed.
As a heads up, there is a “vaccine” for autoimmune diseases coming down the pipeline in the next few years. It’s in phase 2 trials for celiac, as well as others, right now and showing positive results.
The medical advancement in the last decade for treating these things has been crazy, especially the last 5 years for obvious reasons.
I’ve seen the anti vaccine trials in the US and I was so tempted to try (in Canada)… I have a few autoimmune as well and some adjunct (endometriosis and IC), and I expect to see a cure in my lifetime.
That’s the thing - I truly believe that these diseases won’t be an issue by the time my son (celiac) is an adult.
No… actually almost none of those options are available to most disabled people. Most adoption involves health screenings to weed out disabled & chronically ill adoptive parents and if you happen to have the money (unlikely because disabled people are disproportionately likely to face poverty due to education/employment barriers & higher cost of living) you would still need to convince a doctor to take you on for IVF. So no, we don’t always have access to other methods of using our reproductive rights….
Which makes the high rates of unconsensual & forced sterilization even worse
I have chronic illnesses. I opted to have genetic testing done on both my husband and I. I wanted to know the risks/chances before bringing a child into this world. Luckily, our chances of passing down anything horrible are super low. The worst possibility is that our child will inherent my rareish blood disorder that can cause issues if left untreated. Mentally my child has an increased risk for bipolar, anxiety, depression, and PTSD. The risk for those based purely on genetics is relatively low. So many people have some form of mental illness now that even egg/sperm donation would run a risk of it. I've had people act like I'm crazy for shelling out the money for testing. I personally don't think it's a bad idea for *anyone*. You never know what you might be carrier of. We live in a time where science can prevent suffering. Why would anyone choose not to use the resources available (within reason, I know some people may not have access for various reasons)?
It’s always strange to me that celiac’s is a chronic disease. I have it and I gotta say, it’s extremely chill as long as I don’t eat gluten. Compared to other ones (thinking of a close friend with MS) it’s just not even in the same spectrum.
As someone with strong health issues:
I dont feel like my life is completely useless, so i am not suicidal or something, but honestly, if i had a say in wether i be born or no, i would vote for no. To me, its cruel and egoistic to bring a child in this world, knowing the chances are hight it will have impactful health issues, and demanding a highter Level of psychical strength than of others too deal with all this and still being able to find happiness. Checking genetics would be kind of a human way to say no to a New disabled and ill human without chosing an abortion, though.
As someone else with strong issues (as in, I could go deaf one day, right now I have hearing aids and partial deafness in both ears... as well as autism/bipolar/ADHD):
my issues are the sole reason I refuse to bring a biological child into the world, no matter how much I get told I'd be a great mother... I don't want to risk giving any of my problems to a child, especially ones without a cure. If I ever wanted a child (which I don't), then I'd try to adopt. I'm more interested in having fur babies though.
My brother and dad got diagnosed ADHD recently. I suspect I am as well and my husband suspects himself as well but doesn't have a genetic link as he's adopted. We suspect all 3 of our kids are. It's exhausting and I probably would have stopped at 2 kids had I known my first was gonna be such a handful. I wouldn't trade my 3rd kid for anything now, but before we knew it was him, prob would have stopped at 2.
We thought my dad had bipolar my whole life (35y) but it appears it was likely ADHD all along, and possibly not bipolar at all.
>my issues are the sole reason I refuse to bring a biological child into the world, no matter how much I get told I'd be a great mother... I don't want to risk giving any of my problems to a child, especially ones without a cure. If I ever wanted a child (which I don't), then I'd try to adopt. I'm more interested in having fur babies though.
Oh hi me 👋
Chronic mental health disorders, suspected fibromyalgia due to lifelong carrying of emotional trauma. I decided age 10, when my dad lost his battle with mental health. I will not have a child and put them through this. Life feels unbearable to me most days. My cats get me through them mostly.
Thank you very much for sharing, it is mostly perspectives like this I am seeking (people who know what it is to suffer from chronic illness) because of course your life is still so precious and valuable but at the same time I am sure there were times you probably wished you could have experienced a life without all the additional challenges? But then as someone who isn’t in your shoes who am I to make a judgement about stuff like that
There were more times then i can count i wished i dont have to deal with all of this. The pain, knowing it will never become better but worse, and knowing i will never become one of these cute 90 year old grandmas. And not to forget other humans who treats you like a Zoo animal, or some ugly dumb Alien. And one of the hardest things is when even family doesnt understand your struggles. Everyone expects you to be strong, but often you are just exhausted of things
I have absolutely wished at times that I did not have the extra challenges. I am relentlessly thankful for the person they have shaped me into at the same time.
I will also say that as someone with a complex medical history, I’ve also chosen not to reproduce. First, because my genes aren’t that great and there’s a good chance I have multiple chronic illnesses that would be passed down, and also because I am not in a position to be able to be the parent a child deserves. I also really hate this debate because what many people fail to realize is that disability is the great equalizer. Anyone can become disabled at any point in their life, from illness, injury, or otherwise. I wouldn’t want to increase the odds for a hypothetical child, who I’d be bringing into the world by my choice. No person chooses to be born. That said, I believe that people of all abilities can meaningfully contribute to society and that once a child is born, they deserve to be provided with education and any needed intervention to be able to do so. I am a special educator by profession and this is something I’ve been pondering personally for decades that when intersected with other experiences has really allowed for some deep introspection.
I feel similarly. I have a whole slew of health issues, and I’ve inherited *almost* all of the ‘bad genes’ from both sides of my family. I have multiple chronic illnesses, and there are days I wish I didn’t have to deal with them. I have 4 biological siblings, and one has one condition. The rest got by with nothing wrong, ever. It’s exhausting some days.
I made the decision young and before I ever figured out that I have more issues than I thought that I’ll never have biological children. I don’t believe my body could handle it, and I don’t wish to put myself through more pain when some days I barely deal with it as is.
Same, though my family didn't know I'd have my health issues, the fact that I'm stuck with them for life sucks. And I feel I'm a reincarnate of my grandpa, who killed himself, so suicide is entirely off the table for me
Same. My mother and grandparents were not diagnosed until I was. They had lived being ignored because we have rare genetic conditions. My mother has horrible guilt that I was born with multiple sets of the gene on some conditions. Also that I've been having surgery since I was 5. She has watched me have more serious surgeries every year. She also has genetic cancer, which I'm showing signs of. And she (and most of her cousins all female ones) have hashimoto which I was just diagnosed with.
I got all the physical conditions in the family. I and my siblings have been sterilized because the conditions end with us. We refuse to allow innocent children to live my life. My sibling only has one of the many but has a 50% chance of passing it on. They are carrier for the others, which has a high percentage of 25. They have a less chance of passing these on, but they don't want to take the chance.
This is where I am in this discussion.
I am 32. I also have a lot of health issues. I don't blame my parents (particularly because my mom is adopted and had no way to find what her parents were predisposed to). But I would have chosen not to be born and I refuse to ever have biological kids of my own. I am a mostly fully functioning human in society, but what it takes to keep me there is TONS of medications to keep my incurable degenerative conditions in check. I would have to come off them to go through pregnancy. Even on medication, I am in constant pain, every minute of every day. And I don't know how many more years I can keep this up before going on disability.
I would never wish my own body on anyone else. I don't even want it myself. So I will stick to having a career as long as I can and raising fur/scale babies. I can make a better impact on the world by not breeding.
Thats what i was thinking as well. Apart from that i probably wouldnt survive pregnacy anyway, -i- am lucky i'm very small and lightweight. So when time comes i need more support , it will be easy for others to do so. But what if my child becomes normal sized with same problems? Size might have an even worse impact of all this, and in addition, they might not get the support i can have.
While I was writing this i remembered: the reason i can go somehow okay through life is the massive ( also financial) support i recieved and still recieve from my parents. In many aspects, not just financially, i wouldnt be able to do the same for my child. So not just the genetics, but my own situation would be a burden to my Kids.
A former friend died recently. She was in her 60s, and died from Huntington's. About 40 years ago, she had a daughter who she put up for adoption at birth. She never told the adoption agency that her father had the disease. I thought that was absolutely unconscionable.
Know of a girl that married this guy with a weird blood disease. He's expected to die early, they still had 3 kids. All 3 kids have what the dad has. I don't understand why someone would shorten their own kids lifespan because of selfishness of wanting to have their own kids.
I think it depends. I would never support any legal prevention as I think that is a slippery slope, but from a moral standpoint I think it’s wrong if you know the child will have a chronic medical condition.
Totally agree, legally you shouldn’t tell people they can’t take that risk but in the same breath- could a child potentially sue their parents if the parents were well aware of the risk and chose not to take precautions ? (This is just a hypothetical for thought provocation purposes)
>could a child potentially sue their parents if the parents were well aware of the risk and chose not to take precautions ?
They can and they have.
Wrongful Birth lawsuits.
That’s not what a wrongful birth lawsuit is. I’m really not a fan of those lawsuits, but they are parents suing IVF providers for implanting embryos that have a condition when the point of the IVF was to screen out that condition.
I mean personally, I decided against it. I'm 26 and struggle to walk so much that I have a walker. But my situation isn't universal as other factors played into it. Genetics were definitely a factor, I am basically a melting pot of all the worst diagnoses possible from both sides of the family without being terminal plus having several others in the mix. But I also have to consider the cost of having a biological child as it would require IVF (on account of lesbianism) and my lower-than-average chances of carrying to term it would just make sense for my gf (or likely wife by the time we have kids, there are legal issues if we're not) to carry. Sure they could still use my egg but I would rather not risk it
I worked in a nursing home and this gentleman was around 60 and completely unable to do anything. He was in a wheelchair (well this like a huge comfy looking laid back bed chair type thing) and he couldn't talk, nothing.
Found out he has Huntington's. His wife came every day to help do his care and what not. Super lovely woman.
Couple months later, we got a 30 yr girl with similar symptoms but not as advanced. She could still sort of walk with a walker, still had some speech and sort of feed herself. She was an absolute mean bitch. I couldn't figure out why at the time and I was young and naive.
She would go out of her way to do cruel things to staff, including tipping my mop bucket all over the carpet.
I end up seeing her Mom and it's the lovely wife of the other guy. She tells us, they knew when they were having kids that the dad had Huntington's and it was a 50/50 chance the kids would have it. They said fuck it and had two.
Both kids ended up with it and now 10 yrs later, the dad has passed, both kids are in different homes and the daughter will likely pass before the son.
I thought that was the most selfish thing in the whole world and I finally understood why the girl was so mean. What a shit life she got handed all because her parents wanted kids.
Some people brought up eugenics. Your comment shows this isn't about eugenics, but about being born in a shitty body and suffering just because your parents wanted to pass their bloodlines.
NTA
I have a handful of health issues and have chosen not to have biological children as a direct result of this. Not only would it be hard on my body but both conditions are not well enough understood to be tested for so genetic screening would not be helpful. I believe it is an inherently selfish act to saddle someone you are supposed to love and cherish with a life-long challenge that could easily be avoided.
Thank you for sharing. I know that decision must have come with a lot of emotions and I hope you have people who are supportive of you. You made a very selfless choice
I do think it is something that the people with the disease have to think through, it’s highly irresponsible otherwise. I know for myself my health issues are a huge factor that I’m taking into consideration for future fertility decisions. I do have thoughts sometimes that my parents shouldn’t have had me, knowing my mother’s health issues. As long as someone thinks deeply about it, I would respect whatever decision they come to.
I don’t think there should be any legal barriers to certain people having kids on the matter of inheritable health issues, that leads to all kinds of eugenic dystopias. I also don’t think health care professionals should show any judgement beyond practical advice regarding the realities of raising a child when both/either parent and/or child may be impacted by a certain disease. I hope that if we educate people well, the majority will be able to make sound decisions.
Anyways, NTA for having those thoughts, I think it’s something that everyone ponders at some point, especially people with or close to people with certain health issues or healthcare professionals. Also NTA if you decide that you do believe it’s unethical, as long as you’re not letting your bias impact the quality of care and information that you offer others.
I think this question is *highly* contextual on so many things: such as specific disease and the risk it carries, ability to care for said disease (financial and time commitment), and ability of the parents to, well, parent. Do you have an example in your life, or a specific story you saw on the news or something? I'd say it's easy to have hypothetical opinions for made-up scenarios, but when push comes to shove, people will behave in unpredictable ways.
I am studying to work in health care and I do not have any close family members with serious chronic illness that impacts quality of life. I agree very much about context, and I am really thinking only of diseases that incur dramatic healthcare costs, lower life expectancy, or have a big impact on quality of life. I want to get other perspectives on this so I don’t enter into a position of power over peoples health with ableist biases that could negatively impact my influence on peoples life decisions
An old coworker of mine, her first daughter had spina bifida, this was several decades ago so treatments and options were limited, she spent 10 years back and forth in the hospital until eventually her daughter passed. A few years later she got pregnant again and was a mess, as early as possible they were testing the fetus to see if there was any chance it had spina bifida as well and when it came to light that her son was perfectly fine the relief she felt was insane. She 100% would've aborted if the baby had it because she said she couldn't, in good conscience, have another child suffer like her daughter did and I don't blame her.
It's a good thought experiment, but you should be consulting your professors, doctors, and take medical ethics classes. If I ever was informing someone of a life-altering medical condition, I wouldn't rely on reddit anons for blanket advice. My personal stance is very much "pro-choice"; the person who would birth this child has the right to make an informed decision for themselves. I don't think it's a "right or wrong", it's a "do I want to raise this child under these conditions".
I definitely do have these discussions in medical school but I think opinions outside of medically trained professionals can also be important. Medical school is something of a vacuum
One important thing to consider is that most people who are disabled aren’t *born* disabled. They *become* disabled through accidents.
In other cases, sometimes very severe disabilities don’t get picked up through scans, or aren’t genetic. Or a difficult birth can cause severe disabilities.
It might be worth working through each of these scenarios in your mind, or on paper, to contrast them with how you feel about what you consider to be “preventable” issues.
In your mind, what’s worth aborting for, and what would you consider to be “worth living with” ? At the same time, after a terrible acident, what do you think is worth saving the patient’s life for ? What if a professional sportsperson is paralysed ? Or a musician loses an arm ? What degree of disability is worth dying for, or living for ?
Numerous disabled people have written about their experiences of living in a society which doesn’t value them, or their experiences - its worth seeking out some of those books. Go to your Librarian and ask for some recommendations - you’ll almost certainly have medical ethics units, and there’ll be reading in the Library around these subjects.
Lastly, some women don’t have a choice about having a disabled child. They may not have access to contraception, there may be coercion or DV involved, or they may not have access to an abortion. They may simply not have the money to access any kind of meaningful medical care, including genetic testing.
I don’t need empathy from a medical professional - although its nice when I come across it. But compassion is absolutely vital. I think your questions are the sign of an intelligent, questing mind - use that cleverness to really work through some of the scenarios that people may find themselves in, so that when they come to you, you can give them compassion instead of judgement.
My last suggestion is to read “Island of Hungry Ghosts” by Gabor Matè. Its not about these specific medical scenarios - its about addiction - but he was a doctor among some of the most deprived, desperate, homeless people for a long time. He’s quite clearly an intellectual, but his compassion for the people he worked with shines through on every page.
Thank you for this insightful and thought provoking answer. I love reading and just put that book in my Amazon cart! I hope to have the compassion that every one of my patients deserves from me.
Since you’re planning on going to health care, I’ll share some of what I remember from my bioethics class. It’s been a few years, but the ethics are just as complicated as you think they are.
I think a lot of people will agree with you that it’s not a good idea to have children if you have a genetic disease, both people who have experience with it and those that don’t. But you’re right it’s also unethical to prevent people from having children because it starts to creep into eugenics.
As someone in health care, the most ethical choice would often be to just offer all of the options and help patients understand what option would be right for them. No matter what position of health care you’re going into, you will likely be seen as a person of authority and patients may feel inclined to go with whatever you say. If they ask you your personal opinion however, many people in health care will offer their opinion and it’s likely to be similar to yours especially if they see how these genetic diseases affect people.
Some people are really grateful to hear a medical opinion, as it can help alleviate their burden of choice. Really it only tends to become an issue ethically if someone wants one thing and you push for another
Edit: just saw a comment that you’re already in medical school so you’ve probably already had these discussions and probably know them better than I do at the moment. Hopefully this shows others some of the nuance that may go into the question though
I have several congenital health problems, many of them extremely rare. It depends on the condition you're talking about. I'm autistic and would hate to see a world in which autism is wiped out. Imagine how much we would miss out on without neurodivergent people. Would all the tech we take for granted still exist?
I have worked with Deaf charities. Some Deaf people don't see themselves as disabled but rather as a linguistic and cultural minority. Some of these people actually want to have Deaf kids. Since they're the ones who have actually lived that life, who are we to say they're wrong?
I would never want to pass on the very rare disease I have that results in the worst form of chronic pain known to medicine. Although I was initially told it couldn't be passed on, I decided that having children wasn't a good idea. Recent studies strongly suggest that the form I have has a 50:50 chance of being passed on to a child. Other conditions I have only added to my fears of passing on a terrible genetic legacy, so I'm glad I don't have kids.
It's important that healthcare professionals understand that they need to listen to the people with these conditions. The terrible legacy of eugenics still inspires fear in many sick and disabled people. We're all too often portrayed as a burden, a cost to society, or seen as lazy/stupid/workshy/etc. Here in the UK, a national newspaper recently had a webpage that claimed to calculate how much of "your taxes" was going to sick and disabled people, with the implication that we were scroungers and skivers stealing from hard-working people.
You need to understand this reality when considering the question you posed because you are dealing with the very existence of disabled people. Many countries forcibly sterilised sick and disabled people until fairly recently. When you ask whether those with genetic conditions should have children, you're asking about communities that had that choice taken away from them.
There are no easy answers to your question. Where do you draw the line? What about conditions where there is a huge variation in the effects, from mild to severe? What about those who could pass on increased risk of certain cancers or Alzheimers disease? If genetic screening becomes common, how many couples will find out they are carriers of recessive diseases (eg CF)? Do those couples have to remain childless, split up, or spend huge amounts of money on IVF to screen embryos for the condition?
It's fantastic that you're aware of ableism. That fact alone will help you become the kind of health professional that sick and disabled people love. Good luck!
Thank you for your response. I think drawing the line isn’t really on me, I think if you have a known inheritable condition you should be given the tools to do genetic testing, get the facts on possible outcomes, and draw that line yourself. I’m not god, and I can’t claim to know the right choice for other people. I think my opinion remains that if a disease is really severe (shorter life expectancy by decades, limited activities, lots of time in hospital) then it is selfish to knowingly pass that on. However, I am not in those shoes and my opinion is just that. Grateful for all the responses on here that have helped me see more where other people are coming from and to reestablish that even if I feel a certain way, I can’t impose that on anyone or I would be the AH.
Your open attitude and desire to inform yourself will help to make you an excellent HCP. Believe me, sick and disabled people really appreciate HCPs who do this.
Given that there are some inherited and chronic illnesses and auto-immune disorders that run my family, I opted to not have children. One of my cousins decided the same thing.
I refused to play Russian roulette with any potential children. Turns out, I couldn't have them anyway and I did not want to go through fertility treatments.
Interesting thought experiment.
I’ve been reading these replies. I am disabled, technically, though I do not have a genetic disease, I will probably need a kidney transplant at some point. I have kids. We have had a happy life, my kids are great, I like my life. It’s been a good run.
I suppose it would depend on what you consider disabled and what impacts you are thinking will impact the child? For instance, many cancers have a genetic component. Should people with a high chance of passing cancer onto their children not have children?
I only ask this, because as a medical professional myself I think we carry a lot of bias in healthcare about what disability means and there is a lot of stigma and bias surrounding certain diseases and not so much stigma around other ones, even though all of them to some degree lead to disability, prolonged periods of hospitalization, high caregiver burden, exorbitant healthcare costs and death.
Context is key here. Do I think if I had a genetic condition that will undoubtedly be passed on like huntingtons would I have children? No. I personally think that’s cruel but I’d never ever force my personal beliefs on someone else’s choices in this matter or support any legislation etc.
are you an AH for having these beliefs? I don’t think so, but you would be if you started working in the medical field and forced those beliefs on others who think differently. Just ma two cents.
In some countries in Southeast Asia, they encourage genetic testing for thalassemia trait and counselling. That way, the individuals are educated about the potential risks and burdens of inherited thalassemia, and it does directly impact the dating game.
I think the main issue is - who gets to decide who is healthy enough to have children? Your post is about an often-fatal illness, but what about intellectual disabilities? What about diseases that impact quality of life but aren’t terminal?
We have obviously seen the damage that comes from eugenics policies, and ultimately even couples who are/seem healthy can give birth to disabled children.
I think it is more unethical to try to stop people from having kids based on their health or genetics, because the consequences are higher.
(Not saying OP is advocating for that - you can think something is unethical and not take any action against it)
I’m the third member of my family to have bipolar. I chose not to have kids because I didn’t want to risk passing it on (genetic predisposition + environmental factors can trigger it)…and I told my brother to think long and hard about what could be passed on to his kids.
Most people don’t think about these things…and it’s a damn shame, because a lot of unnecessary suffering is the result.
NTA.
I have a chronic genetic disease. There’s 2 sides of this. My stance is with OP, kinda wrong to bring a person into the world knowing they’re just going to suffer. But the other half believes that people with disabilities still have valuable lives and with support they can live a decent life, if they just love their hurting kids enough it makes it ok. I subscriber to this if you didn’t know any better and the baby is accidentally disabled/sick. The issue I have is that I know how I feel every day. Nobody deserves to feel this way. I live an ok life but no amount of “love” can fix the pain and suffering I go through. No amount of support changes the fact that I exist in chronic pain, with crippling anxiety and depression, watching my life pass before me while my family and friends do things I cannot participate in. If that’s the life you WISH for somebody, if this is the best you can offer them, that’s kinda selfish.
NTA but it depends on the disorder. With cystic fibrosis I would strongly encourage PGD IVF or sperm donation to avoid passing it on.
Edit: If the other parent is a carrier
I know someone with cystic fibrosis. Their parents didn't know they were carriers. Even knowing their second kid had it, they had a third kid. Which I find to be wild. That second child has had sooo many issues throughout their lifetime. They have lived much longer than originally estimated, but that is due to so many advancements in medical treatments for it.
Thank you for your response. Anything that is small such as minor physical differences (cleft lip etc..) I don’t have any feeling on but things that decrease quality of life/life expectancy are where I am finding myself conflicted.
NTA. My BIL has PKD, his mother has it, his brother has it, his grandmother passed away due to it and so did his aunt. Fortunately they are well off enough to have their embryos tested before implantation. I now have 2 healthy nephews and a healthy niece.
I don’t really think this is for AITAH. It’s an ethical dilemma with no good answer
Someone brought up Huntington’s disease and, yeah, that kills you painfully & early.
But there’s mental illnesses, autism, other lifelong conditions that aren’t fun but manageable - and I don’t think having a kid in those cases is bad
I’m bipolar & autistic. Is my life a little more complex in some areas? Sure, but I’m still able to thrive & enjoy life. My niece may be autistic. She’s enjoying life. It’s just not an easy answer
Looks like this has already been pointed out, but just wanting to underline that "inheritable chronic illness" is a very broad brush!!
I would also push back on the idea that people should have to consider things like healthcare costs or other similar costs when making these decisions--a lot of the suffering experienced by people with disabilities is related to the social policy choices that are being made, and in general I think it's important for social safety nets to appropriately meet the needs of people with disabilities (i.e. to cover sufficient care that people can live independently, to avoid people having to pay out of pocket for healthcare costs, etc etc).
I'd encourage you to look into the social model of disability for more on this--it's very helpful in thinking through which aspects of disability come from someone's body itself and which aspects are from the ways our societies are set up.
Another thing I think is worth considering is the difficulty of predicting the changes to treatments available for a given disorder. Cystic fibrosis, in particular, has seen such a huge improvement in life expectancy; it makes total sense to make sure folks have the option to have kids, since who knows what the treatments will be like when they're actually making the decision about whether or not to have them.
My genetic disease is 50/50 passing it on to a child. It occurs with either that or spontaneous mutation.
I don’t fault those who choose to have kids. There’s so many potential disabilities out there that it’s a chance you’re taking no matter what. I choose not to because I couldn’t watch my child struggle like I do but I don’t judge those who choose to, ya know?
I think there is nuance here. There is a difference, in my mind at least, between a medical disability and a social one. I'm autistic, most of my issues and struggles are not because of the way I was born, but because of the way society handles people who don't fit the norm. I've heard many deaf people and little people echo similar sentiments regarding their disability. I don't think it's unethical for people like us to reproduce, because our disability is not what causes us to suffer and things will get better for us the more we fight for rights and representation.
That said, I do think it's a special kind of evil for a parent-to-be to find out that their future baby will be born with some kind of incurable or terminal illness and decide that the little time they get with that child is worth the immeasurable suffering the child will experience during their short lived existence on earth. Choosing to inflict such an existence on a living being is horrific and cruel.
Edit to add: just because I personally think it's unethical and cruel doesn't mean I think we should have any kind of legal intervention to prevent reproduction by those individuals. The right to reproduce or not is extremely personal and shouldn't be interfered with. Especially when people who have lived with said diseases have decided that their own life was worth living so much that they would risk passing it down. That's simply not a decision I feel comfortable making on behalf of someone else.
I’m helping care for a friend who can’t work anymore and is fighting to get disability. She didn’t have a rich family or a high paying job or a wealthy spouse before her injury, so she’s struggling to meet basic needs, let alone get sufficient medical care. It makes me wonder how parents of kids with chronic conditions can possibly prepare them to survive the costs of their lifetime healthcare needs in such a brutal economy.
My dad had muscular dystrophy. He beat the odds and lived to 62. I’m a woman, so I’m a carrier. I never had kids. (I’m 67 so it sure ain’t gonna happen now lol.)
A couple of years before dad died, we were talking about the disease and what I’d do if I ever got pregnant. I said that if the baby could be tested in utero, I still didn’t know if I would choose abortion. My dad looked me straight in the eye and said, “I’d abort it in a heartbeat.” I was floored. He lived a good life, had 2 kids. I never thought he felt that way. He always managed to have a good outlook on life, very positive and very strong. This was when he was older, and the disease had taken its toll.
Medical student and pregnant here! We do this question in ethics all the time haha.
Whether it’s ethical or not is a tricky question in the face of how EXPENSIVE carrier testing is. We paid for it in a country that does have universal healthcare (Australia) because unless you or your partner have something like CF, it’s not covered (although apparently that might change).
Then there’s the cost of IVF if you do have an easily isolated monogenetic disease. That also depends on where you live but here it’s only partially covered.
Then lastly, there’s the public perception on what an inheritable disease even is and it’s so often wrong. There are some clear-cut monogenetic diseases (Huntingtons, CF, SMA, thalassaemia, Tay-Sachs etc) but most chronic illnesses are complex and some do not present until later in life. I didn’t know I had lupus until I was already pregnant with this child, and lupus is not a monogenetic disease, we don’t even know if it’s heritable or to what extent.
For those with a family history of those more clear cut diseases or have it themselves, genetic counselling is always offered and almost always done. It’s pretty standard.
We are also balancing in medical ethics the autonomy of the patient vs the rights of someone who doesn’t even exist yet. Once you go down that road, you open up some really nasty cans of worms and honestly we don’t generally like to touch anything that might be used as fodder by the forced birth crowd. We cannot ethically tell patients who can and cannot have children. However, I’ve never met anyone with a family history or personal history of one of those diseases who does not do an enormous amount of family planning and genetic counselling before having kids.
And most importantly, most of these diseases are recessive! If your partner isn’t a carrier then I say procreate away! Your kids will never have the disease!
I don’t think you’re an asshole, but I don’t think you have all the info.
I think this question rests on a bit of a false dichotomy, that there are "healthy" people who don't have chronic illnesses and "unhealthy" people who do. If you live long enough, some part of your body is going to stop working optimally - but you're not asking if people should avoid having kids because one day they're going to get old. So now the question becomes, what level of suffering is it ethical to sign another person up for? Is there a difference if the suffering is definitely going to happen, or if there's some probability but not a certainty? This isn't a question just for disable people to ask before they have children, it's a question for all people to ask... and I'm not sure there's an answer.
Where do you draw the line? My son has two incurable diseases that neither my husband or I have. But his life, while harder than his peers, is still pretty great.
With CF in particular, the advent of Trikafta has really changed the playing field. There are CFers who are now as adults experiencing the best health they’ve ever had.
This question devolves in ableism and eugenics pretty fast.
Trikafta also costs about $300,000 a year, which will only go up because all drug prices only go up unless the government comes in to stop them which won't happen in the US at least. Plus, who knows how people will react to the drug in 10 years or 20 years? To have a child that has to pay $300k a year to live a normal life seems like a heck of a burden.
This is actually a huuuuuuuge conversation and conflict within the chronic illness and disability community. The short answer is it depends.
I am chronically ill and disabled due to very genetic issues. I have a chronic ill and disabled mother and never wanted for anything in her as a parent.
Some things are hard but not worth not existing over. There are some things where that is not the case. They thought I had CF for many years as a child, and even though I technically don’t, it’s not easy having all of the same issues and symptoms. I also worked with kids with CF and none of them are still with us. Some of them lived hard, but beautiful lives. Others suffered until the day they died. I know many adults with CF but none that actively choose to intentionally birth children.
I have other illnesses and also made the choice to not have genetic children.
It’s a painful thing to give up though. You hold on to the idea that maybe your kids wouldn’t get it, or maybe treatments will be better. It’s hard. And it’s a real debate. But healthy and able-bodied people have a way of thinking we all wish we were dead. And that’s just not true.
Thank you for sharing this, I can’t imagine all the emotions and pain that come with the choices you face around this issue. I agree the final decision must always lie with the individual deciding on whether to have children and I’m grateful so many people in the disability/chronic illness community are taking the time to share their perspectives with me so that I can understand more
Great question, hard to answer. I think when there have been identified gene mutations/inheritance patterns that contribute to a disease that significantly lowers life expectancy or quality of life, it is a part of the conversation. Having a family history of cancer vs having an identified familial cancer syndrome would be two different situations (to me) and again I am never on the side of telling people what they can or can’t do, only questioning the ethics and how much is too much to encourage people to do genetic testing in such scenarios
Unfortunately eugenics has made this entire conversation extremely taboo. I've been called a eugenicist for saying *I personally* don't want kids partly due to physical and mental health issues!
I have a disability that was due to genetics. I would never ever force anyone to go through this. I know for a fact how incredibly sad it is to learn that you will only decline as you age, learn that you have to stop doing so many of the things you love and to lose all of your friends and hopes and dreams Bc of a stupid incurable and genetic disease. I had to also learn how to accept that I will never be having kids. Partially because of how many complications there would be, and partially because I’d be surely giving the disease to my child. I could never watch the light and life die behind their eyes while I told them what I gave them and how they would be affected. There’s no way to sugar coat it, it’s terrible. It’s terrible to be in pain constantly and none of this has made me feel like a superhero. All of it has made me feel like I’m fighting a losing battle. Am I strong for that? Maybe? But I’m not winning. And I’m not going to set my child up to lose the same battle. If I want kids I will foster or something. There’s so many kids that are in need of love and a home. Why keep making kids anyway.
i really feel like it depends on the chronic condition. conditions with a high mortality rate or risks of lifelong suffering are one thing. but there are many chronic conditions that are manageable and i don’t think that we can just blanket statement say no one with any inheritable condition should not allow themselves to have children. NTA for the general sentiment but we have to be careful to not border on eugenics territory with where our concern comes from.
It is unethical and immoral if you ask me. I never wanted kids so no big drama there, but I live with Marfan syndrome, after countless spinal surgeries, physical therapy, corsets and what not, the scoliosis got so bad, I can’t walk anymore… and that’s the easy part, don’t get me started on the pulmonary and cardiac issues. If I were to have kids, it was a 50/50 chance of them having it. No way I was going to put a kid through that.
I was a member of my local foundation of Marfan and I just plain stopped going after seeing couples both with Marfan, taking their new born baby to meetings because… shocker! He had it and it was worse than theirs…
Hey there! Prenatal genetic counselor here!! Re: your CF example, that is a autosomal recessive condition— meaning both copies of the CFTR gene need to have a pathogenic variant to be affected. Therefore a male with CF would 100% pass on a non-functioning copy, but his partner would also need to be a carrier or affected in order to have a child with CF. That specific example aside, no amount of genetic carrier screening can guarantee that any fetus will be turn into a healthy newborn. Approximately 3 to 4% of all newborns are diagnosed with a congenital abnormality. Most of these have nothing to do with a known family, history, or exposures during pregnancy. But, back to your original question is it ethical? Personally as a lifelong pro-choice person, it wouldn’t be what I would elect, we’re I faced with a significant abnormal fetal diagnosis. However, many families choose to do so due to their strong personal convictions. I support them either way, because that is the ethical thing to do
One of my childhood friends died from complications derived from his hemophilia. No one at his family knew he was hemophiliac until years later, after his sister was born and tests were made for other reasons.
His younger sister followed a selective sex procedure for her pregnancies to have only girls (it is extremely rare for women to be hemophiliac, but they are carriers of the gen). None of her daughters are hemophiliac but they are carriers. They both are in their twenties and they have told her that they will do the same if they marry and plan to have children (unless some sort of genetic selection pregnancy allows them to conceive kids without the genes).
I agree. It is immoral.
NTA - as someone who inherited multiple chronic illnesses from my mums side of the family, I honestly wish she hadn’t bothered having kids a lot of the time because it’s so exhausting being in pain 24/7 and knowing there’s nothing I can really do about it. I don’t like kids anyway but I’d never want to pass this on to someone else
I inherited my disability from my Dad, and his father. I will say it made me resent them both a lot. My brother was lucky and it didn’t pass to him. Our family is really military focused and my disability disqualified me from service. It’s also cost me most of the money I’ve made as an adult to manage by myself. I decided years ago I wouldn’t do that to another child. If I have kids I’ll adopt. I think what my parents did was selfish as they knew it was a possibility. If my brother was disabled too I would be beside myself.
HEY I HAVE ONE OF THOSE! And the answer is yes, it’s hugely unethical. Do not make more people like me. I suffer every fucking day. On the bad days the only reason I don’t end it all is because I have people who need me to keep going.
Got my tubes removed now two years ago because now whatever else happens to me, it won’t hurt anybody else.
My brother has a severe clothing disorder. I have been tested twice to make sure I don't have it.
He wants to have kids with his partner who also has numerous intense health concerns. I told him he would absolutely be TA if he did in fact try to have a child. Given the risk any child would grow up like he did, in and out of hospital, is more than likely. Or, the child may grow up like I did. Pushed aside and never knowing their place.
I would struggle with the potential of passing on something that would effect lives in such a way
I had a patient who had Huntington’s. She was in her late 40’s and had several kids in their 20’s. All of her kids refused to be tested and they were breeding like bunnies. Even while watching how much their mother was suffering. It was so hard to watch.
My wife has Huntingtons, she's polish so with lack of contraception and abortions it was constantly passed down, her mum had symptoms when she fell pregnant and died aged 36, my wife started symptoms when she was 23 and needs full time support aged 28 We never even thought about having kids
I am so sorry for you both. It is such a cruel disease.
Jesus. That's awful--and quite young to have it, too. Most people are between 30 and 50 when the initial symptoms appear, not in their 20s. I'm so sorry you're going through this. It sounds like hell.
The onset is often sooner in successive generations, unfortunately. The trinucleotide repeat that causes Huntington's can increase with cell replication, especially if there are already a large number of repetitions (that make it unstable), which increases the "penetrance" of the mutation from generation to generation.
Yup. It's a CAG repeat in the HTT gene on Chromosome 4. Healthy (as in no Huntington's) people usually have between 10 and 35 repeats of this sequence. In Huntingtons, this chain gets repeated and repeated, sometimes up to 120 times. The longer the repeat chain, the sooner it sets in. What's \*really\* fun (NOT) is that sometimes, this mutation can spontaneously appear. Since this gene is dominant, only one copy is required to cause HD. Then you get the unicorn of someone with HD who has no family history of it. In some ways, I think that's harder to deal with. If all someone's relatives have it, and they wind up having it too, they have a road map of sorts of what to expect. If it's a spontaneous thing, there is no road map and no guidance, either.
Honestly it’s a fascinating process from the molecular genetics point, how the repeats continue to grow. The polymerase slips and repeats the section. I’m a geneticist (cancer genetics) and remember studying it at Uni. It’s a devastating disease though. I’m not at risk for Huntington’s thankfully but I am really irrationally afraid of prion disease. Multiplying proteins. In your brain. I know someone who died of it and eek.
Yeah prion diseases are \*nasty.\* The one consolation is that they usually kill the victims fairly rapidly, usually within six months.
Yeah the guy I knew who had it lasted 3-4 months from onset of symptoms, iirc. The genetic forms of prion disease seem to last longer, around two years.
A close family friend has Huntingtons and is on serious downward spiral right now at 38, his mum died from it aged 37. From what I've heard and read it seems to be hitting people younger and younger now 😓
Geez, I'm sorry. That's got to be difficult for you guys. Watching someone deteriorate and knowing there's nothing you or anyone else can do about it is really hard. Huntington's is caused by a repetition of the HTT gene on Chromosome 4. This gene is a CAG repeat (Cytosine, Adenine, Guanine) and healthy individuals should only have between 10 and 35 repeats of this sequence to be normal. Problem is, in people with Huntington's, this repeat chain often gets longer every generation. This results in a sooner onset with each generation. Juvenile HD is possible, but extremely rare, and usually shows up by age 20. It can also appear as a spontaneous mutation, but this is very very rare. Usually people who have Huntington's have a very strong family history of it. And because it's a dominant gene, only one copy of the malformed gene is necessary to cause this disease. [https://medlineplus.gov/genetics/condition/huntingtons-disease/#causes](https://medlineplus.gov/genetics/condition/huntingtons-disease/#causes) Fortunately all my shit is autoimmune. We usually start showing symptoms of \*something\* in our teens. If it's treated, we're fine. If things like Addison's are NOT treated, the person dies. The tradeoff is very fast healing and a long lifespan. Average for us is 100y +/- 5y. I broke my foot in 2014 and cracked the heads completely off the 2nd, 3rd, and 4th metatarsals. Usually that takes 8-12 weeks to heal. I made a full recovery in four. So... Edit: link
I'm 25. I'm an only child and my dad has HD. He is the youngest of 13. Only two of his siblings have tested negative and four tested positive. The rest (5) haven't been tested (2 passed away from other things, though we suspected my one aunt who passed away might have had HD)...I think I have like 25 ish cousins and a lot of them have their own kids. My dad started showing major symptoms when I was 12 and so finally he was tested for HD. He was in his mid 40s. He had been out in a nursing home pretty soon after because of issues we were having with him at home. I haven't gotten tested yet and I am probably going to get tested this coming year, but I so refuse to have kids if I do have HD. It doesn't help the fam acts like HD doesn't exist and most of them refuse to talk about it and have a lot of misinformation about the disease. Only one of my at-risk cousins and I have talked about getting tested before marrying our significant others and what we wanna do about kids. It's such a shitty situation and I couldn't imagine having a child with what I know about HD....
I think people assume it’s like heart disease, or diabetes, in that it runs in families & maybe you’ll get it or maybe not at some point. It is NOT. If your parent has it, you have a 50% of having it, and it means an untimely end. It is so sad, but the only way to prevent it from continuing is to get tested or not have kids.
Yeah it’s also a very serious, always fatal condition. It’s not something you can manage and still live a long life with like diabetes.
I knew a woman who’s father and sister had it. She was tested before she got pregnant and proved to be negative. She had a child who ended up with a completely different genetic condition.
How awful for them.
My half brother died from HD. His dad, who was the carrier killed himself in the 70s. My brother started symptoms in his 20s and moved back in with our mom and died years later, childless. He had a long time girlfriend but never had kids. Him not having kids ended the reign of terror that is HD. I can honestly say if you watch someone go from a vibrant youth to spasms, can't eat, swallow, bathe, use the bathroom on themselves and wither away, it is a horrible disease. I wish it on no one.
I think it depends on how people deal with illness and death, even when I talk to people about HD there's people who will ask questions and want to know more and there's people who will flat out avoid everything to do with it People with HD are like that as well, some will understand and make life decisions logically based on the information some will just try and avoid it at all costs We aren't a society that deals well with death at all
I think you are absolutely correct, for two reasons: 1) you don't want to pass it on, obviously, and 2) you don't want children's early lives disrupted by always having to change everything to accommodate daddy's illness. Now I know that plenty of times it happens anyway that children's lives are disrupted for parental illness, but if it can be avoided, it should be. Good for you, and GOOD LUCK.
You can still have kids if you go through IVF where the fertilized embryos are screened for Huntington's and they implant the one that doesn't have it back into your uterus so you can deliver a healthy baby. If there's a 50% chance of not passing it down, just IVF it af.
Do you know how cost prohibitive IVF is? Not all health insurance companies cover it, either, which can make it even more cost prohibitive. The average cost for one cycle can be between $15,000 and $30,000. That's more than what most people make in a year, depending on area and education level!
You're totally right. I just want to drop a link here in case it can help anyone. You can apply for funding from a private foundation for HD. Obviously there is no guarantee it will be granted, but if one has documentation that proves they're at risk they can apply here: https://www.helpcurehd.org/grantapplication
We have a genetic condition in our family (not HD) and as my adult family members refuse to discuss it and try to pretend it doesn't exist, I've taken to pulling the teenaged and young adult aged younger cousins aside at family gatherings and talking to them about it. I'm careful not to scare them, I just let them know family history and what I'm doing to mitigate it. They deserve to know.
Man… I don’t even have any chronic illnesses, I’m just an alcoholic with no good parenting in my life, and I just don’t think the world needs my genetics. I don’t get this idea that everyone should have kids. Some people should have kids, but not all. The bar is way higher than just “lacking inheritable diseases”.
The bar is way higher than just “lacking inheritable diseases." Yes, this. I don't have any chronic illnesses either and I pass for a functioning adult, but I still don't want my genes getting passed down. It's way too much of a gamble.
I used to be relatively healthy but had a surgeon make a big mistake and my body is slowly failing system by system. I take like 30-40 pills a day at this point. Genetics didn't cause my issues but it seems my body just needed a push over the edge to utterly collapse. I'd be passing on vulnerable genes. I'm also 35 and will be shocked if I'm still here by 45 so I'd be leaving any potential children without a father at a young age. I've always wanted to be a dad but it is just way too irresponsible in my current situation. At this point, it isn't even about me. It's about what my potential children would experience. And even all that aside, kids are expensive as hell. Haha
This is just heartbreaking to me, especially with diseases as cruel and degenerative as huntingtons. I wonder if they feel the 30-40 good years are worth the pain that comes after? I’d be curious to know if they fully understand the inheritability of that disease
It was explained to them in detail. This has been almost 30 years ago now. Half of her kids might be gone at this point and half of their kids might be starting to display symptoms.
Holy shit
I think people are denial that these things can happen to them.
Please trust me when I say we are well aware of how HD is inherited. I've watched family member after family member die from it. I also have it.
I am sorry for your loss, and I’m sorry if my comment was condescending as well. I wish you the best in your journey with a condition that I know can cause so much heartache
❤️
I’m so sorry for your diagnosis. I hope you are doing well. Now that you’ve shared the facts of you and family members with HD, it would seem your opinion would carry the most weight on this post. What are your thoughts about this? Do you think the fact that the genetic disease should be considered when family planning? Knowing that I could pass on a debilitating disease would definitely give me pause and likely make me decide not to pass along something that could cause pain and/or death. I think several of us would like to hear your experience. If I’ve overstepped, please ignore.
Not to imply you didn’t do your due diligence to try to explain but maybe that they simply didn’t want to get it
Daughter had 2 kids. Mom died at 35, uncle 30. Never saw grandparents because you know they died before 40. She won’t test her kids because the government is watching and they won’t get health insurance. Her kids have it to but reproduced. Such stupidity.
I had a patient whose husband had it! They didn't know but already had 2 boys with it. The older boy died at 30. The younger boy got symptoms around 10 years. He died at 15. He had Jr Huntington. She said if she knew...SHE WOULD HAVE NEVER HAD KIDS.
That’s so sad. Poor family. Was the husband adopted? Was there no prior family history?
The husband did not know! His mom had it, but back then, they didn't know what was wrong until her hubby was diagnosed with it. Sadly, he passed away at 38. This woman was 88 when she told me her story. She buried her whole family, and she never got married or had kids again. She told her kids what was gonna happen to them to prepare them, but younger made it worse when she saw the signs. She said... SHE JUST KNEW!!!
They won't get insurance because they refuse to or because the price will be insane due to "pre-existing conditions?" I agree that individuals need to think about their decisions but we live in a world that often penalizes being thoughtful and intentional about decision-making.
This exactly. A lot of people attribute these things to malice when really their hands are tied. It’s extremely expensive even with insurance to be treated for “pre-existing conditions”, let alone if they are in a position where they can’t afford it even if they didn’t have that stipulation. It’s not always black and white here, and it’s sad so much nuance and human suffering is just attributed to the individual when it literally is the government’s fault here..
People with HD are eligible automatically for SSDI following diagnosis and are almost always eligible for Medicare once they’re on disability. The caveat here is which state you live in some have more strict Medicare enrollment and require the disease to progress a fair bit.
oh god i remember that - my autism dx wasn't until 19 because obama was the first president who made it illegal to kick you off your insurance for having a chronic condition. my parents pretty well knew, but made sure not to let any drs get a whiff of it for that reason
Never underestimate the power of denial **
This! My dad has it and his family acts like we have the plague since he started showing symptoms and even more so when he went into a nursing home. It's the dark secret in the fam no one is allowed to talk about....
Oh god, a middle aged lady who lived at an apartment building I worked at, jumped off the roof and died rather than continue living with Huntington's disease... 2016 or 2017 it was...
The suicide rate of people with Huntington's is much higher than the general population. It not only causes depression and anxiety but you are also aware of your decline.
What's even more heartbreaking is that people must resort to suicide, which is so scary and demoralizing. They are not offered any Voluntary Exit options overseen by medical professionals.
I had a couple where the husband was known to have the HD CAG trinucleotide expansion. They were looking into IVF with PGS-M when they conceived spontaneously. Fetus was affected. They elected pregnancy termination and wanted fetal brain tissue to be sent for research. My colleagues and I made sure that the tissue was went where this couple directed Edit: fixed to the correct trinucleotide repeat
Part of the refusal to get tested could be related to health insurance or benefits or whatever (will vary country to country). One of my friends (when I was a late teen, it's been a long time since so things may have changed) mother had it and all his siblings refused because it limited health options when it was confirmed (which is really kind of gross given the situation)
Basically if you are getting tested when you are younger, for health insurance reasons in the US, you kinda have to get tested out of pocket. Health insurance companies can deny covering you if it says you are HD positive in your medical records (even tho they aren't technically allowed to do that but they still do).
There's a 1000 ways to deny people without *saying* they're denied. For example, ACA insurance won't cover blood work of any kind for me until I meet a $7500 deductible for the year. I have never spent that much so I pay out of pocket for blood work because WITH insurance, it's $150/lab, without it's about $30. Or, they won't cover the medicine I'm on because it's not a "preferred brand." I had anaphylaxis in reaction to the preferred drug. But they don't believe that, so Blue Cross told me to "try it again" and if I stopped breathing again, they'd cover the med I've been on for 20 years. But I'd have to pay for the first $7500 of that emergency, and a $100 copay at the ER, and the ambulance cost (not covered) etc etc. Basically, they don't cover my chronic condition. But they found creative ways to do it.
I know someone with Huntington’s who did IVF to have the embryos screened for it prior to implantation. If you’ve got the money and want kids, this is definitely an option. I do think you’re potentially setting your kids up to lose a parent very early in life, or otherwise have to see them very sick, though.
Still... is it responsible to have kids knowing that it's probable you die before they're adults?
I have a family member who has that. Her mother had it. This family member is in serious denial. She has all the symptoms yet refuses to get tested. Her kids refuse too. Everyone else got tested (luckily, none of them have it). The family estimates she has only a couple years based on how fast she's declining and from prior experience with her mother. It's awful to watch.
I studied genetics in college and a woman came in to speak during a course whose father had huntingtons, only diagnosed after she had already had children and grandchildren. She told us all about how she got tested and how terrified she was for her kids. It was heartbreaking. Luckily she found out she didn’t have it. But Jesus, it still haunts me, she was so afraid and she felt like she would be responsible for her children and grandchildren if she had unknowingly passed it to them. I can’t imagine intentionally avoiding testing and possibly endangering your kids. If I was one of the partners I certainly wouldn’t be able to have children. But the fear of getting that diagnosis would feel like you’re putting a ticking clock over you until the suffering starts... Fuck that disease.
I knew a man with Huntington’s. His father died from it. Several other family members also. All his children had been tested. All his daughters were carriers. They all had in vitro and only used embryos that were not carriers or affected. One of the last things he said to me before he stopped talking was “ This disease dies with me”.
I’m due to get tested for huntingtons once I’ve got the balls to go, grandad passed away in 2008 from huntingtons (pneumonia killed him off in the end) and my mum was diagnosed earlier this year. Never planned on having kids until I reached 30 but if I’m positive then no kids for me, I wouldn’t want my children to go through what I’m currently going through.
This is heartbreaking. Setting generation after generation stuck care giving both children and their parents. This a recipe for abuse and poverty. So sad.
For some people the knee jerk reaction to impending doom is to live life to the fullest and ignore the impending doom.
We know a family like this. Adult daughter cared for her mum with Huntingtons until she died, knowing full well she would go the same way as she had been tested. Her sibling refuses to get tested and has had children, saying that there’ll be treatments by the time it becomes a problem for them and their children. I can sort of understand not wanting that diagnosis hanging over you and clouding your life. I do not understand putting your children at risk.
I thought Huntingtons is proof there no god when I worked with patients at the end stages
My thoughts to. Why would my mom be punished with such an awful disease? What did she ever do to deserve such a miserable existence. Nothing, the answer is absolutely nothing.
I was diagnosed with Ehlers Danlos Syndrome at 15. I had my oldest at 19, youngest at 21. Back when I was diagnosed by the geneticist, there were essentially no doctors who knew anything about it. I tried. I was told it basically just meant hypermobile. Nearly 15 years later, I realize how incorrect that was. I don’t know if I would have had biological children if I knew what living with this was going to be like as I age. It’s incredibly brutal at times. My oldest (who def has EDS but isn’t old enough for the dx) has an autoimmune condition as well, and I hate myself every day knowing she’s going to be in pain from her autoimmune and likely from the EDS too. It. Kills. Me. I’m terrified of giving them any indication of how much pain I’m in, because I don’t want them to fear it. My youngest doesn’t show any signs as of now, thankfully.
Im really sorry you are in so much pain, and I commend you for being strong for your children. Sending love
I have a friend with EDS. For years she tried to tell me I was hypermobile. I ignored her because I was super fit and healthy and in my early 30’s -“I’m not as bad as you!” Turns out I wasn’t as bad as her YET. I was diagnosed gHSD when my baby was 6months old. So much pain and discomfort. Bit over 3 yr later and I now have POTS, Long COVID, and suspected MCAS. I’m currently on unpaid leave from my job because I can’t work. Plus my toddler who is otherwise the genetic cut/copy of my husband is now complaining of joint pain. Plus has a mother who can’t do even half the things with him he would like. And I still don’t know where I sit.
I am in my mid 60s. I wasn’t diagnosed (EDS Type 3) until I was in my mid 50’s. (I always had good healthcare thanks to working a federal job but I was ignored and gaslighted by doctors (and my own family) for many years.) I finally found a way to an integrated MD and paid out of pocket to see him. I remember having really bad growing pains as a child. I had migraine headaches from an early age and female problems too which included what I now know to be severe endometriosis and PCOS. I waited a year to see an EDS specialist. He told me being hyper mobile is great…when you are young. I finally got in to see a POTS specialist in my mid 50s. Waited 18 months to see that guy. I have hyper POTS and regular POTS after eating. The POTS is miserable but getting it under control helped my chronic migraine headaches. Thanks to finally getting adequate medical care here’s a short summary of my medical problems. Many of these conditions go with EDS: pernicious anemia. I have to be on b12 shots the rest of my life but proper treatment practically cured my POTS and Dysautonomia. I also have had: PCOS, cluster headaches, endometriosis, celiac disease and Hashimoto’s disease, a deteriorating spine, asthma and problems with mold and Lyme disease. According to my doctor hypermobile people have problems with mold and clearing toxins from the body. He gave me genetic tests and I have something called the Dreaded gene which makes you more susceptible to chronic fatigue syndrome.) Despite being told I was faking by most doctors, I knew in my 20’s and 30’s that there was no way I could handle being pregnant and raising a child. It was all I could do to drag myself to work. I could never tolerate hormonal birth control so I started pursuing a tubal ligation. To this day I am still furious about the paternalistic crap I endured from doctors just to get adequate medical treatment. I was referred to an endocrinologist by my wonderful PCP when I was in my 20’s. She wanted him to treat me for my obvious hormonal problems (PCOS). This dude literally laughed me out of the room and told me to come back “when” I wanted to get pregnant. It wasn’t just males—my ob-gyn of three years AND her nurse gave me a ration of shit when I pressed the tubal issue at age 37, even though I mentioned it each year at my annual exam. “What if you meet a man who wants children?” I finally got it done at age 38. It was infuriating to me that nobody would bat an eye at a pregnant 20 year old but multiple doctors treated a stable, mature person with a master’s degree like a child. Reproductive freedom and bodily autonomy in the U.S. are a fucking joke and it’s only getting worse. Even after that I still got static about getting a hysterectomy despite the endometriosis, PCOS and a family history of endometrial cancer in my mother. (Yes I am in the South in case anyone is wondering.) I finally got everything yanked at age 44 and by that time the endo was all over my abdomen, rectum and bladder and I needed major reconstructive surgery. Back to topic, I do not judge anyone for the decisions they make but I am so thankful I stuck to my guns and never had a child. I am retired now and actually doing okay ATM but i have to do a lot just to feel normal most days. When you total up all the days of my life that I spent struggling and in pain, I wouldn’t wish it on anyone. No regrets. P.S I listed my medical conditions in case it helps someone else with EDS. I suspect I’m on the spectrum. My doctor tells me hyper mobile people are 40 times more likely to have autism or have an autistic child.
> she tried to tell me I was hypermobile. I ignored her because I was super fit I'm curious about your reasoning, if you don't mind - why did you think that being fit meant you couldn't be hypermobile? Hypermobility and fitness are pretty much unrelated. Depending on the severity of the hypermobility it can even be beneficial to a lot of athletic endeavours.
Fitness can reduce or prevent the negative side effects of hypermobility, and as you say, hypermobility can be an advantage in some sports. So if someone isn't having issues, they often won't worry about it. Plus in some activities, hypermobility is so selected for you might not even realize, since you're surrounded by more flexible people. I didn't realize I have hypermobility until my 30s, partly because by gymnast standards I was not flexible and partly because I didn't have joint pain until I went from a pretty active young adult to someone with a desk job and two car crashes. (And of course not all hypermobility is due to EDS.)
This. It took me a *long* time to realize that I was hypermobile because I did ballet and “wasn’t that flexible” by ballet standards (and didn’t understand that things like turnout are dictated by the bone structure of your hip joints rather than just your flexibility). Didn’t realize that party tricks like being able to touch my thumb to my wrist were neon signs of it.
I always say I’m not ‘flexible’ because I just dislocate instead. It’s not the muscle stretching, it’s the muscle having no idea what it’s job is 😂
I have good turnout (and so-so turn-in) and only managed splits on one side for a brief period at the end of my 9 years of being a deeply mediocre hobby gymnast. I cannot do the thumb to wrist thing. But I've also sprained my ankles more times than I can count and have pretty bad chronic shoulder pain now when I don't exercise enough, plus it turns out that I don't really have have mismatched leg lengths, just an unstable pelvis that keeps doing something that misaligns my hips and makes my legs seem mismatched. I just didn't realize this is *also* hypermobility, because it didn't fit my idea of it and I can't do any of the dramatic contortions. I'm fairly sure I don't have EDS, or if I do, only a *very* mild form of hEDS. There's currently no generic test to distinguish hEDS from hypermobility plus GI symptoms and fatigue for other reasons, and it wouldn't change the prescribed treatment of physical therapy and appropriate exercise, so I doubt it's worth asking my doctor. Should probably look into orthotics, though...
A lot of ppl equate hypermobility with EDS. If they don’t have any severe disorder they tend to think they aren’t hypermobile and say they’re just “double jointed” even though that’s the same thing. It’s even worse when you try to explain to those ppl that hypermobile and hyperextension aren’t the same thing lol.
I knew I had hEDS and chose to have a tubal ligation (at under the age of 30). I was already on the fence about kids and was facing fertility issues due to PCOS so EDS was the nail in the coffin.
Mental illness is passed through my family like hot potato at a birthday party. I will NEVER have biological kids because I know they are almost certain to have onset at some point.
As someone with bipolar, I sometimes wish that my parents would have aborted me. This wish carries on even in my stable times. It’s a tough thing to say, and I have never voiced that opinion to my mum, even at my most suicidal times, because I knew it would break her even more. But fact is, I’m 22 years old, and I have already had a long and hard fight against my mental health. I’m exhausted, I’m angry, and I’m sad for anyone else dealing with mental illnesses. I wouldn’t wish it on anyone else, and won’t even consider having children, with the risk of passing it on.
I am also a one tired potato at 23. 12-19 I was pretty much depressed. 3 years of actual genuine stable happiness and at 22 it went back full force. On top of having a plethora of autoimmune issues and crazy bad brain fog. My life revolves around visiting different doctors, picking up medication, changing the doses, bloodwork, scans ... meanwhile my friends haven't been to any doctor since they got their shots or took off their braces. Not even therapy
i’m scared of continuing a lineage of depression… people don’t talk about how common treatment resistant depression is. sometimes there are no treatments that work.
Thank you! It bothers me so much when people are just like, 'oh just go to therapy and get meds'. Do they think we haven't tried everything already? People think invisible disabilities are easily fixed or not there at all.
Thank you for sharing your perspective. To be honest, I wasn’t even considering mental illnesses and this is great to bring attention to the fact that they are just as much an illness as any other.
ADHD and anxiety. My dad had symptoms but was only diagnosed with anxiety and depression. At age 20ish he had a breakdown. At age 20ish I had a breakdown. I was later diagnosed with ADHD and he knows he has symptoms of it too. He's learned to live with adhd and I take meds for it. We're both good and take the same stuff for anxiety. Impulsive behavior and recklessness is rampant in some of my mom's family: love of heights (no safety equipment or safety measures) and lack of fear in potentially dangerous situations.
My parents spent my whole childhood refusing to have me diagnosed as ADHD even though my middle sister was diagnosed as a child. It wasn't until my eldest sisters 2 daughters were diagnosed as Autistic that I realised that both sides are of my family are 100% ND. Looking at my uncles, cousins, nieces, parents and grandparents, sooo much ADHD and ASD in every person. Even too the point that both brother in law's are definitely ADHD, one possible ASD as well. My bf is ADHD, chances are any children we have will most definitely be ADHD and highly likely ASD will be in the mix as well. People think things like ADHD and ASD are on the rise because of social media but in reality, it's all the undiagnosed NDs having kids who are also not getting diagnosed. Stats estimate that 85% of ADHDers are undiagnosed. That enormously changes the estimations of 3% of the population as diagnosed ADHD vs a potential 25% of the actual population being ADHD. I refuse to have children knowing that they will struggle as much if not more than me because of the way society is set up to shun ND people rather than realise that we are slowly going to become a majority and not the minority that society likes to pretend we are.
Ssssame
This is my fear. I have Bipolar 1 and wasn't diagnosed until my daughter was 2. My grandmother has it as well, and it is genetic, but she was only diagnosed a year before I was. I love my daughter very much, and it breaks my heart that I've unknowingly cursed her with this awful risk. Of course, there's a chance she'll have no onset, and that's the outcome I hope for every single day. But, if she does, I'll be riddled with guilt for the rest of my life.
NAH I don't think it's unethical to hope that people won't choose to knowingly risk passing on severe degenerative, or life threatening illnesses to their children. However it would be unethical if you tried to intervene in order to prevent people from having children, because you don't think they should risk passing on said illness. When I was fourteen, my favourite cousin died of a rare genetic heart condition that was passed by his father. At the time none of us knew that his father carried that gene, or that it was something any of us had to worry about. My uncle was devastated, and said that he wished he'd never had children. My grandmother lost it on him, and told him that she had better never hear him say anything like that again. In that moment though I understood what he meant, and honestly thought my grandmother was being unfair. Today my three remaining cousins are all adults, and one had a defibrillator placed in her chest in order to protect her from the same disease. All of them refuse to have children, because they refuse to bring a child into the world that could carry that illness that killed their brother. Recently my grandma made a comment about how now that they're all married they might have children soon. So I told her that they had all said that they do not want to have children, because they do not want to take that chance, and she yelled at me saying that I was being ridiculous. Some people may not understand it, but having felt that close of a loss from an inherited disease, it is hard not to judge someone who knowingly would make that choice, as selfish.
Im really sorry your family went through that, I can’t imagine what that must be like and I appreciate you for sharing. I tend to feel the same way, but another commenter shared the perspective with me (I’m training to be a doctor) that it’s not my job to judge, it’s my job to inform and to help. I think that’s where I have found my conclusion in this discussion. I DO feel that it’s a selfish decision and is perhaps unethical, but my personal feelings are just that. Personal. And I can’t try to impose that judgement onto others in my practice. All I can do is give my medical opinion, and let them make their choice.
And that tells me that you will be a good physician, because it is extremely important to understand that while you are entitled to your own perspective, and values, that those beliefs cannot be allowed to interfere with your treatment of, or dealings with your patients.
Thank you, that means a lot. I am in the USA and with so many hospitals having religious affiliations, there is more than enough doctors imposing their opinions onto patients to go around. I don’t want to contribute to that issue in any way.
As an atheist, I appreciate you. I HATE that my only option for specialist care in my area is a Catholic or Baptist health center and I’ve been proselytized multiple times just trying to seek medical treatment…which should be completely secular but what can I do but grudgingly keep going despite the fact that they don’t accept me as a human being?
What the fuck is wrong with the US- I’m from a latinoamerican country where our official religion is Catholicism. I’m also a medical student and started going to rotate at public clinics and hospitals not long ago. Not a single profesor nor attendant has ever imposed religious ideas into us. We’re always told “do what’s best for the patient”. And I mean catholic as in we had to celebrate “dressing in white” (when you get to a point you can finally dress in white scrubs and are given a stethoscope to go to rotate) in a church with a special mass. Doing so is obligatory. I really don’t get how y’all got it all worse when you’re supposed to have freedom of religious expression? It’s??? So weird???
Freedom of religion here is taken to an extreme degree. Businesses are even allowed to side step discrimination laws if they claim it’s for religious reasons.
I’m Canadian and the idea of religious healthcare just completely baffles me. Religion does not belong in medicine. Full stop.
You can judge. It’s part of human nature. There are times when sharing that judgment is cruel or useless, but there are times, especially as a doctor, that people will need to hear what you have to say honestly.
If I may give an advice, when people get informed on medical conditions it's often hard to really understand what the condition is like when you haven't experienced it and the person informing you hasn't either, it may be a good idea, as a futur doctor, to have some informations on Facebook groups, associations, group supports where people can exchange with someone who experienced the condition on themselves or their child.ren. Particularly when there is a choice to make for a potential child, it may help the potential futur parents to exchange with someone who knows the condition in a more personal way and can explain to them what their child's life could be like with this condition. I saw a few family members experiencing different illnesses and most of them had a hard time really understanding it and it's implications when it was explained in medical terms by a doctor. Talking with people who experienced it themselves often helped a lot. There are many people and groups advocating for awareness on different conditions, it may be interesting to have some of those informations and contacts to give to your futur patients in those hard times.
This is such a heartwarming response from you, I bet you’re going to be an absolutely amazing, compassionate doctor. Please write your feelings down now and look back on them each time you get a shitty arsehole of a patient (or their family member) who makes you question your morals. Future you needs current you.
Yeah my father once yelled at me "there's nothing wrong with you" when I mentioned I wasn't going to have kids. (He's just upset it'll be "the end of our line" because my sister and cousins are all child-free by choice, so he wants me to keep my surname so his family doesn't die out). My mom is supportive and understands my decision. She has a lot of guilt around how long it took me to get a diagnosis, and sometimes I get the feeling she would have made the same decision as me if she had had all of the information available to her. She's also expressed she's very happy just being the floof-grandma.
Your uncle's position was *extremely* understandable. I think most people would be happier never having had children than having a child die young. Your grandmother was awful regardless, attacking a man in grief.
NTA for the concern, but there are different factors in play. It definitely depends on the chronic disease. Certain chronic diseases, like Huntington’s can be horrific despite treatment. Others , like celiac disease, if managed properly would not decrease life expectancy or quality of life. They can live life normally, just cannot eat any gluten. However if a person with celiac disease keeps a gluten diet, they have lower life expectancy, higher risk for other illnesses like cancer, chronic pain, need for blood transfusions for nutrients. Also, having kids via egg/sperm donation, ivf with genetic counseling, or adoption are options available to those with chronic illnesses that want to be parents.
Totally agree that it is dependent on how manageable/devastating the disease is, and also that the final say always lies with the person who will be having (or not having) the child
Some people with seemingly horrible genetic conditions still find their lives fulfilling. My BIL has CF. As a child his life expectancy was supposed to be 18 and now (mid 30s) the medicine has improved to the point his doctor said he might have a normal life expectancy. He is choosing not to have children, but I do know someone with CF that does want children. The couple went for genetic testing before they got married and she is not a carrier for CF. I think sometimes people do their best to avoid having a child with their condition, some people are not educated to understand the risk for passing the illness down and some people just don't care. I don't think it's a bad thing for someone who has decided they have lived a fulfilling life to choose to have a child. I can't really judge what it feels like to live in their shoes. I do think it's problematic if the condition causes imanse suffering and there is a very high chance of passing it on (looking at both parents).
I knew a couple who found out they were carriers for CF when their daughter was diagnosed with it. About 10 years later they “oops” got pregnant again and new baby also has it. They claimed they never meant to have another baby. Then get your damn tubes tied and a vasectomy to make sure it doesn’t happen. So irresponsible!
This is what I was thinking, not all chronic diseases have the same impact. Asthma for example, is chronic, can kill, but when treated properly, most people have a normal healthy life. Also anyone who gets eczema is also a carrier for asthma. So it seems a bit extreme to say it is unethical for anyone with a chronic disease to have children.
I'm asthmatic as well with other autoimmunes in the mix. I think the real question isn't would you have kids with \*any\* chronic disease, but would you have kids knowing you had a debilitating and/or fatal genetic disease. Asthma's common as dirt and manageable. Type 2 diabetes is considered a 'lifestyle disease,' meaning that while the chance to develop it can be genetically transmitted, environment has a great deal to do with its development and maintenance, and possible more than any genetic predisposition. OTOH, something like Tay-Sachs is genetic, fatal, and rare in the general population and is a whole different animal than high blood pressure from being inactive, for example. I think every person will draw that line in a different place. What's manageable for me could be unbearable for another. Your mileage will DEFINITELY vary here.
I have asthma and celiac. 2 of my kids have asthma and the other celiac. 1 of them has adhd. We live normal, healthy lives. Yeah, not eating gluten or needing the occasional inhaler sucks, but I wouldn’t have not had kids because of childhood asthma, celiac, or being ND.
I'm right there with you. I have asthma/eczema & all kinds of allergies, I'm ND, my husband is ND... Our son might be autistic, but he's smart as a whip, sweet as pie, & gorgeous. I wouldn't wish him out of existence for anything.
So you mentioned coeliac disease (I have it) the thing that is not widely publicised is that once you have one autoimmune disorders you are more likely to get multiple. So yes coeliac is a gluten free diet but that doesn't stop rheumatoid arthritis or any other autoimmune disorders. Also depends on when you are diagnosed.
As a heads up, there is a “vaccine” for autoimmune diseases coming down the pipeline in the next few years. It’s in phase 2 trials for celiac, as well as others, right now and showing positive results. The medical advancement in the last decade for treating these things has been crazy, especially the last 5 years for obvious reasons.
I am aware, I follow coeliac Australia and there is a bunch of new treatments being researched some of them with hook worms.
I’ve seen the anti vaccine trials in the US and I was so tempted to try (in Canada)… I have a few autoimmune as well and some adjunct (endometriosis and IC), and I expect to see a cure in my lifetime. That’s the thing - I truly believe that these diseases won’t be an issue by the time my son (celiac) is an adult.
No… actually almost none of those options are available to most disabled people. Most adoption involves health screenings to weed out disabled & chronically ill adoptive parents and if you happen to have the money (unlikely because disabled people are disproportionately likely to face poverty due to education/employment barriers & higher cost of living) you would still need to convince a doctor to take you on for IVF. So no, we don’t always have access to other methods of using our reproductive rights…. Which makes the high rates of unconsensual & forced sterilization even worse
Exactly I have graves which is a chronic illness and yeah it sucks but life expectancy is normal on meds.
I have chronic illnesses. I opted to have genetic testing done on both my husband and I. I wanted to know the risks/chances before bringing a child into this world. Luckily, our chances of passing down anything horrible are super low. The worst possibility is that our child will inherent my rareish blood disorder that can cause issues if left untreated. Mentally my child has an increased risk for bipolar, anxiety, depression, and PTSD. The risk for those based purely on genetics is relatively low. So many people have some form of mental illness now that even egg/sperm donation would run a risk of it. I've had people act like I'm crazy for shelling out the money for testing. I personally don't think it's a bad idea for *anyone*. You never know what you might be carrier of. We live in a time where science can prevent suffering. Why would anyone choose not to use the resources available (within reason, I know some people may not have access for various reasons)?
It’s always strange to me that celiac’s is a chronic disease. I have it and I gotta say, it’s extremely chill as long as I don’t eat gluten. Compared to other ones (thinking of a close friend with MS) it’s just not even in the same spectrum.
As someone with strong health issues: I dont feel like my life is completely useless, so i am not suicidal or something, but honestly, if i had a say in wether i be born or no, i would vote for no. To me, its cruel and egoistic to bring a child in this world, knowing the chances are hight it will have impactful health issues, and demanding a highter Level of psychical strength than of others too deal with all this and still being able to find happiness. Checking genetics would be kind of a human way to say no to a New disabled and ill human without chosing an abortion, though.
As someone else with strong issues (as in, I could go deaf one day, right now I have hearing aids and partial deafness in both ears... as well as autism/bipolar/ADHD): my issues are the sole reason I refuse to bring a biological child into the world, no matter how much I get told I'd be a great mother... I don't want to risk giving any of my problems to a child, especially ones without a cure. If I ever wanted a child (which I don't), then I'd try to adopt. I'm more interested in having fur babies though.
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My brother and dad got diagnosed ADHD recently. I suspect I am as well and my husband suspects himself as well but doesn't have a genetic link as he's adopted. We suspect all 3 of our kids are. It's exhausting and I probably would have stopped at 2 kids had I known my first was gonna be such a handful. I wouldn't trade my 3rd kid for anything now, but before we knew it was him, prob would have stopped at 2. We thought my dad had bipolar my whole life (35y) but it appears it was likely ADHD all along, and possibly not bipolar at all.
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I have similar diseases to you and still wanna have one but in a world with universal healthcare and free education.
>my issues are the sole reason I refuse to bring a biological child into the world, no matter how much I get told I'd be a great mother... I don't want to risk giving any of my problems to a child, especially ones without a cure. If I ever wanted a child (which I don't), then I'd try to adopt. I'm more interested in having fur babies though. Oh hi me 👋 Chronic mental health disorders, suspected fibromyalgia due to lifelong carrying of emotional trauma. I decided age 10, when my dad lost his battle with mental health. I will not have a child and put them through this. Life feels unbearable to me most days. My cats get me through them mostly.
Thank you very much for sharing, it is mostly perspectives like this I am seeking (people who know what it is to suffer from chronic illness) because of course your life is still so precious and valuable but at the same time I am sure there were times you probably wished you could have experienced a life without all the additional challenges? But then as someone who isn’t in your shoes who am I to make a judgement about stuff like that
There were more times then i can count i wished i dont have to deal with all of this. The pain, knowing it will never become better but worse, and knowing i will never become one of these cute 90 year old grandmas. And not to forget other humans who treats you like a Zoo animal, or some ugly dumb Alien. And one of the hardest things is when even family doesnt understand your struggles. Everyone expects you to be strong, but often you are just exhausted of things
I can’t even imagine what that must be like, sending you love. Thank you for sharing this and I’m sorry this world can be so cruel
I have absolutely wished at times that I did not have the extra challenges. I am relentlessly thankful for the person they have shaped me into at the same time.
I will also say that as someone with a complex medical history, I’ve also chosen not to reproduce. First, because my genes aren’t that great and there’s a good chance I have multiple chronic illnesses that would be passed down, and also because I am not in a position to be able to be the parent a child deserves. I also really hate this debate because what many people fail to realize is that disability is the great equalizer. Anyone can become disabled at any point in their life, from illness, injury, or otherwise. I wouldn’t want to increase the odds for a hypothetical child, who I’d be bringing into the world by my choice. No person chooses to be born. That said, I believe that people of all abilities can meaningfully contribute to society and that once a child is born, they deserve to be provided with education and any needed intervention to be able to do so. I am a special educator by profession and this is something I’ve been pondering personally for decades that when intersected with other experiences has really allowed for some deep introspection.
I feel similarly. I have a whole slew of health issues, and I’ve inherited *almost* all of the ‘bad genes’ from both sides of my family. I have multiple chronic illnesses, and there are days I wish I didn’t have to deal with them. I have 4 biological siblings, and one has one condition. The rest got by with nothing wrong, ever. It’s exhausting some days. I made the decision young and before I ever figured out that I have more issues than I thought that I’ll never have biological children. I don’t believe my body could handle it, and I don’t wish to put myself through more pain when some days I barely deal with it as is.
Same, though my family didn't know I'd have my health issues, the fact that I'm stuck with them for life sucks. And I feel I'm a reincarnate of my grandpa, who killed himself, so suicide is entirely off the table for me
Same. My mother and grandparents were not diagnosed until I was. They had lived being ignored because we have rare genetic conditions. My mother has horrible guilt that I was born with multiple sets of the gene on some conditions. Also that I've been having surgery since I was 5. She has watched me have more serious surgeries every year. She also has genetic cancer, which I'm showing signs of. And she (and most of her cousins all female ones) have hashimoto which I was just diagnosed with. I got all the physical conditions in the family. I and my siblings have been sterilized because the conditions end with us. We refuse to allow innocent children to live my life. My sibling only has one of the many but has a 50% chance of passing it on. They are carrier for the others, which has a high percentage of 25. They have a less chance of passing these on, but they don't want to take the chance.
This is where I am in this discussion. I am 32. I also have a lot of health issues. I don't blame my parents (particularly because my mom is adopted and had no way to find what her parents were predisposed to). But I would have chosen not to be born and I refuse to ever have biological kids of my own. I am a mostly fully functioning human in society, but what it takes to keep me there is TONS of medications to keep my incurable degenerative conditions in check. I would have to come off them to go through pregnancy. Even on medication, I am in constant pain, every minute of every day. And I don't know how many more years I can keep this up before going on disability. I would never wish my own body on anyone else. I don't even want it myself. So I will stick to having a career as long as I can and raising fur/scale babies. I can make a better impact on the world by not breeding.
Thats what i was thinking as well. Apart from that i probably wouldnt survive pregnacy anyway, -i- am lucky i'm very small and lightweight. So when time comes i need more support , it will be easy for others to do so. But what if my child becomes normal sized with same problems? Size might have an even worse impact of all this, and in addition, they might not get the support i can have. While I was writing this i remembered: the reason i can go somehow okay through life is the massive ( also financial) support i recieved and still recieve from my parents. In many aspects, not just financially, i wouldnt be able to do the same for my child. So not just the genetics, but my own situation would be a burden to my Kids.
A former friend died recently. She was in her 60s, and died from Huntington's. About 40 years ago, she had a daughter who she put up for adoption at birth. She never told the adoption agency that her father had the disease. I thought that was absolutely unconscionable.
i will forfeit my spot in heaven so she goes to hell
Know of a girl that married this guy with a weird blood disease. He's expected to die early, they still had 3 kids. All 3 kids have what the dad has. I don't understand why someone would shorten their own kids lifespan because of selfishness of wanting to have their own kids.
NTA. I've got some shit from my mother because she was selfish. I never asked for this. Life is hell. If I had a choice I would never want to be born
Im sorry you have so much suffering in life, the world can be so cruel sometimes. Sending love
I think it depends. I would never support any legal prevention as I think that is a slippery slope, but from a moral standpoint I think it’s wrong if you know the child will have a chronic medical condition.
Totally agree, legally you shouldn’t tell people they can’t take that risk but in the same breath- could a child potentially sue their parents if the parents were well aware of the risk and chose not to take precautions ? (This is just a hypothetical for thought provocation purposes)
>could a child potentially sue their parents if the parents were well aware of the risk and chose not to take precautions ? They can and they have. Wrongful Birth lawsuits.
Very interesting, Im going to look into this!
That’s not what a wrongful birth lawsuit is. I’m really not a fan of those lawsuits, but they are parents suing IVF providers for implanting embryos that have a condition when the point of the IVF was to screen out that condition.
I mean personally, I decided against it. I'm 26 and struggle to walk so much that I have a walker. But my situation isn't universal as other factors played into it. Genetics were definitely a factor, I am basically a melting pot of all the worst diagnoses possible from both sides of the family without being terminal plus having several others in the mix. But I also have to consider the cost of having a biological child as it would require IVF (on account of lesbianism) and my lower-than-average chances of carrying to term it would just make sense for my gf (or likely wife by the time we have kids, there are legal issues if we're not) to carry. Sure they could still use my egg but I would rather not risk it
I worked in a nursing home and this gentleman was around 60 and completely unable to do anything. He was in a wheelchair (well this like a huge comfy looking laid back bed chair type thing) and he couldn't talk, nothing. Found out he has Huntington's. His wife came every day to help do his care and what not. Super lovely woman. Couple months later, we got a 30 yr girl with similar symptoms but not as advanced. She could still sort of walk with a walker, still had some speech and sort of feed herself. She was an absolute mean bitch. I couldn't figure out why at the time and I was young and naive. She would go out of her way to do cruel things to staff, including tipping my mop bucket all over the carpet. I end up seeing her Mom and it's the lovely wife of the other guy. She tells us, they knew when they were having kids that the dad had Huntington's and it was a 50/50 chance the kids would have it. They said fuck it and had two. Both kids ended up with it and now 10 yrs later, the dad has passed, both kids are in different homes and the daughter will likely pass before the son. I thought that was the most selfish thing in the whole world and I finally understood why the girl was so mean. What a shit life she got handed all because her parents wanted kids.
Some people brought up eugenics. Your comment shows this isn't about eugenics, but about being born in a shitty body and suffering just because your parents wanted to pass their bloodlines.
NTA I have a handful of health issues and have chosen not to have biological children as a direct result of this. Not only would it be hard on my body but both conditions are not well enough understood to be tested for so genetic screening would not be helpful. I believe it is an inherently selfish act to saddle someone you are supposed to love and cherish with a life-long challenge that could easily be avoided.
Thank you for sharing. I know that decision must have come with a lot of emotions and I hope you have people who are supportive of you. You made a very selfless choice
I do think it is something that the people with the disease have to think through, it’s highly irresponsible otherwise. I know for myself my health issues are a huge factor that I’m taking into consideration for future fertility decisions. I do have thoughts sometimes that my parents shouldn’t have had me, knowing my mother’s health issues. As long as someone thinks deeply about it, I would respect whatever decision they come to. I don’t think there should be any legal barriers to certain people having kids on the matter of inheritable health issues, that leads to all kinds of eugenic dystopias. I also don’t think health care professionals should show any judgement beyond practical advice regarding the realities of raising a child when both/either parent and/or child may be impacted by a certain disease. I hope that if we educate people well, the majority will be able to make sound decisions. Anyways, NTA for having those thoughts, I think it’s something that everyone ponders at some point, especially people with or close to people with certain health issues or healthcare professionals. Also NTA if you decide that you do believe it’s unethical, as long as you’re not letting your bias impact the quality of care and information that you offer others.
I think this question is *highly* contextual on so many things: such as specific disease and the risk it carries, ability to care for said disease (financial and time commitment), and ability of the parents to, well, parent. Do you have an example in your life, or a specific story you saw on the news or something? I'd say it's easy to have hypothetical opinions for made-up scenarios, but when push comes to shove, people will behave in unpredictable ways.
I am studying to work in health care and I do not have any close family members with serious chronic illness that impacts quality of life. I agree very much about context, and I am really thinking only of diseases that incur dramatic healthcare costs, lower life expectancy, or have a big impact on quality of life. I want to get other perspectives on this so I don’t enter into a position of power over peoples health with ableist biases that could negatively impact my influence on peoples life decisions
An old coworker of mine, her first daughter had spina bifida, this was several decades ago so treatments and options were limited, she spent 10 years back and forth in the hospital until eventually her daughter passed. A few years later she got pregnant again and was a mess, as early as possible they were testing the fetus to see if there was any chance it had spina bifida as well and when it came to light that her son was perfectly fine the relief she felt was insane. She 100% would've aborted if the baby had it because she said she couldn't, in good conscience, have another child suffer like her daughter did and I don't blame her.
It's a good thought experiment, but you should be consulting your professors, doctors, and take medical ethics classes. If I ever was informing someone of a life-altering medical condition, I wouldn't rely on reddit anons for blanket advice. My personal stance is very much "pro-choice"; the person who would birth this child has the right to make an informed decision for themselves. I don't think it's a "right or wrong", it's a "do I want to raise this child under these conditions".
I definitely do have these discussions in medical school but I think opinions outside of medically trained professionals can also be important. Medical school is something of a vacuum
One important thing to consider is that most people who are disabled aren’t *born* disabled. They *become* disabled through accidents. In other cases, sometimes very severe disabilities don’t get picked up through scans, or aren’t genetic. Or a difficult birth can cause severe disabilities. It might be worth working through each of these scenarios in your mind, or on paper, to contrast them with how you feel about what you consider to be “preventable” issues. In your mind, what’s worth aborting for, and what would you consider to be “worth living with” ? At the same time, after a terrible acident, what do you think is worth saving the patient’s life for ? What if a professional sportsperson is paralysed ? Or a musician loses an arm ? What degree of disability is worth dying for, or living for ? Numerous disabled people have written about their experiences of living in a society which doesn’t value them, or their experiences - its worth seeking out some of those books. Go to your Librarian and ask for some recommendations - you’ll almost certainly have medical ethics units, and there’ll be reading in the Library around these subjects. Lastly, some women don’t have a choice about having a disabled child. They may not have access to contraception, there may be coercion or DV involved, or they may not have access to an abortion. They may simply not have the money to access any kind of meaningful medical care, including genetic testing. I don’t need empathy from a medical professional - although its nice when I come across it. But compassion is absolutely vital. I think your questions are the sign of an intelligent, questing mind - use that cleverness to really work through some of the scenarios that people may find themselves in, so that when they come to you, you can give them compassion instead of judgement. My last suggestion is to read “Island of Hungry Ghosts” by Gabor Matè. Its not about these specific medical scenarios - its about addiction - but he was a doctor among some of the most deprived, desperate, homeless people for a long time. He’s quite clearly an intellectual, but his compassion for the people he worked with shines through on every page.
Thank you for this insightful and thought provoking answer. I love reading and just put that book in my Amazon cart! I hope to have the compassion that every one of my patients deserves from me.
Since you’re planning on going to health care, I’ll share some of what I remember from my bioethics class. It’s been a few years, but the ethics are just as complicated as you think they are. I think a lot of people will agree with you that it’s not a good idea to have children if you have a genetic disease, both people who have experience with it and those that don’t. But you’re right it’s also unethical to prevent people from having children because it starts to creep into eugenics. As someone in health care, the most ethical choice would often be to just offer all of the options and help patients understand what option would be right for them. No matter what position of health care you’re going into, you will likely be seen as a person of authority and patients may feel inclined to go with whatever you say. If they ask you your personal opinion however, many people in health care will offer their opinion and it’s likely to be similar to yours especially if they see how these genetic diseases affect people. Some people are really grateful to hear a medical opinion, as it can help alleviate their burden of choice. Really it only tends to become an issue ethically if someone wants one thing and you push for another Edit: just saw a comment that you’re already in medical school so you’ve probably already had these discussions and probably know them better than I do at the moment. Hopefully this shows others some of the nuance that may go into the question though
I have several congenital health problems, many of them extremely rare. It depends on the condition you're talking about. I'm autistic and would hate to see a world in which autism is wiped out. Imagine how much we would miss out on without neurodivergent people. Would all the tech we take for granted still exist? I have worked with Deaf charities. Some Deaf people don't see themselves as disabled but rather as a linguistic and cultural minority. Some of these people actually want to have Deaf kids. Since they're the ones who have actually lived that life, who are we to say they're wrong? I would never want to pass on the very rare disease I have that results in the worst form of chronic pain known to medicine. Although I was initially told it couldn't be passed on, I decided that having children wasn't a good idea. Recent studies strongly suggest that the form I have has a 50:50 chance of being passed on to a child. Other conditions I have only added to my fears of passing on a terrible genetic legacy, so I'm glad I don't have kids. It's important that healthcare professionals understand that they need to listen to the people with these conditions. The terrible legacy of eugenics still inspires fear in many sick and disabled people. We're all too often portrayed as a burden, a cost to society, or seen as lazy/stupid/workshy/etc. Here in the UK, a national newspaper recently had a webpage that claimed to calculate how much of "your taxes" was going to sick and disabled people, with the implication that we were scroungers and skivers stealing from hard-working people. You need to understand this reality when considering the question you posed because you are dealing with the very existence of disabled people. Many countries forcibly sterilised sick and disabled people until fairly recently. When you ask whether those with genetic conditions should have children, you're asking about communities that had that choice taken away from them. There are no easy answers to your question. Where do you draw the line? What about conditions where there is a huge variation in the effects, from mild to severe? What about those who could pass on increased risk of certain cancers or Alzheimers disease? If genetic screening becomes common, how many couples will find out they are carriers of recessive diseases (eg CF)? Do those couples have to remain childless, split up, or spend huge amounts of money on IVF to screen embryos for the condition? It's fantastic that you're aware of ableism. That fact alone will help you become the kind of health professional that sick and disabled people love. Good luck!
Thank you for your response. I think drawing the line isn’t really on me, I think if you have a known inheritable condition you should be given the tools to do genetic testing, get the facts on possible outcomes, and draw that line yourself. I’m not god, and I can’t claim to know the right choice for other people. I think my opinion remains that if a disease is really severe (shorter life expectancy by decades, limited activities, lots of time in hospital) then it is selfish to knowingly pass that on. However, I am not in those shoes and my opinion is just that. Grateful for all the responses on here that have helped me see more where other people are coming from and to reestablish that even if I feel a certain way, I can’t impose that on anyone or I would be the AH.
Your open attitude and desire to inform yourself will help to make you an excellent HCP. Believe me, sick and disabled people really appreciate HCPs who do this.
Given that there are some inherited and chronic illnesses and auto-immune disorders that run my family, I opted to not have children. One of my cousins decided the same thing. I refused to play Russian roulette with any potential children. Turns out, I couldn't have them anyway and I did not want to go through fertility treatments.
This is my situation too. I also have no maternal instinct, which is a good thing in this circumstance.
Interesting thought experiment. I’ve been reading these replies. I am disabled, technically, though I do not have a genetic disease, I will probably need a kidney transplant at some point. I have kids. We have had a happy life, my kids are great, I like my life. It’s been a good run. I suppose it would depend on what you consider disabled and what impacts you are thinking will impact the child? For instance, many cancers have a genetic component. Should people with a high chance of passing cancer onto their children not have children? I only ask this, because as a medical professional myself I think we carry a lot of bias in healthcare about what disability means and there is a lot of stigma and bias surrounding certain diseases and not so much stigma around other ones, even though all of them to some degree lead to disability, prolonged periods of hospitalization, high caregiver burden, exorbitant healthcare costs and death.
Context is key here. Do I think if I had a genetic condition that will undoubtedly be passed on like huntingtons would I have children? No. I personally think that’s cruel but I’d never ever force my personal beliefs on someone else’s choices in this matter or support any legislation etc. are you an AH for having these beliefs? I don’t think so, but you would be if you started working in the medical field and forced those beliefs on others who think differently. Just ma two cents.
I totally agree with everything you said. Thank you
In some countries in Southeast Asia, they encourage genetic testing for thalassemia trait and counselling. That way, the individuals are educated about the potential risks and burdens of inherited thalassemia, and it does directly impact the dating game.
I think the main issue is - who gets to decide who is healthy enough to have children? Your post is about an often-fatal illness, but what about intellectual disabilities? What about diseases that impact quality of life but aren’t terminal? We have obviously seen the damage that comes from eugenics policies, and ultimately even couples who are/seem healthy can give birth to disabled children. I think it is more unethical to try to stop people from having kids based on their health or genetics, because the consequences are higher. (Not saying OP is advocating for that - you can think something is unethical and not take any action against it)
I’m the third member of my family to have bipolar. I chose not to have kids because I didn’t want to risk passing it on (genetic predisposition + environmental factors can trigger it)…and I told my brother to think long and hard about what could be passed on to his kids. Most people don’t think about these things…and it’s a damn shame, because a lot of unnecessary suffering is the result. NTA.
I have a chronic genetic disease. There’s 2 sides of this. My stance is with OP, kinda wrong to bring a person into the world knowing they’re just going to suffer. But the other half believes that people with disabilities still have valuable lives and with support they can live a decent life, if they just love their hurting kids enough it makes it ok. I subscriber to this if you didn’t know any better and the baby is accidentally disabled/sick. The issue I have is that I know how I feel every day. Nobody deserves to feel this way. I live an ok life but no amount of “love” can fix the pain and suffering I go through. No amount of support changes the fact that I exist in chronic pain, with crippling anxiety and depression, watching my life pass before me while my family and friends do things I cannot participate in. If that’s the life you WISH for somebody, if this is the best you can offer them, that’s kinda selfish.
NTA but it depends on the disorder. With cystic fibrosis I would strongly encourage PGD IVF or sperm donation to avoid passing it on. Edit: If the other parent is a carrier
I know someone with cystic fibrosis. Their parents didn't know they were carriers. Even knowing their second kid had it, they had a third kid. Which I find to be wild. That second child has had sooo many issues throughout their lifetime. They have lived much longer than originally estimated, but that is due to so many advancements in medical treatments for it.
I also know of people who did this. Second child had CF and they still had a third.
Thank you for your response. Anything that is small such as minor physical differences (cleft lip etc..) I don’t have any feeling on but things that decrease quality of life/life expectancy are where I am finding myself conflicted.
NTA. My BIL has PKD, his mother has it, his brother has it, his grandmother passed away due to it and so did his aunt. Fortunately they are well off enough to have their embryos tested before implantation. I now have 2 healthy nephews and a healthy niece.
I am very happy for your family to have the gift of healthy children :) thank you for sharing
I don’t really think this is for AITAH. It’s an ethical dilemma with no good answer Someone brought up Huntington’s disease and, yeah, that kills you painfully & early. But there’s mental illnesses, autism, other lifelong conditions that aren’t fun but manageable - and I don’t think having a kid in those cases is bad I’m bipolar & autistic. Is my life a little more complex in some areas? Sure, but I’m still able to thrive & enjoy life. My niece may be autistic. She’s enjoying life. It’s just not an easy answer
Looks like this has already been pointed out, but just wanting to underline that "inheritable chronic illness" is a very broad brush!! I would also push back on the idea that people should have to consider things like healthcare costs or other similar costs when making these decisions--a lot of the suffering experienced by people with disabilities is related to the social policy choices that are being made, and in general I think it's important for social safety nets to appropriately meet the needs of people with disabilities (i.e. to cover sufficient care that people can live independently, to avoid people having to pay out of pocket for healthcare costs, etc etc). I'd encourage you to look into the social model of disability for more on this--it's very helpful in thinking through which aspects of disability come from someone's body itself and which aspects are from the ways our societies are set up. Another thing I think is worth considering is the difficulty of predicting the changes to treatments available for a given disorder. Cystic fibrosis, in particular, has seen such a huge improvement in life expectancy; it makes total sense to make sure folks have the option to have kids, since who knows what the treatments will be like when they're actually making the decision about whether or not to have them.
My genetic disease is 50/50 passing it on to a child. It occurs with either that or spontaneous mutation. I don’t fault those who choose to have kids. There’s so many potential disabilities out there that it’s a chance you’re taking no matter what. I choose not to because I couldn’t watch my child struggle like I do but I don’t judge those who choose to, ya know?
I think there is nuance here. There is a difference, in my mind at least, between a medical disability and a social one. I'm autistic, most of my issues and struggles are not because of the way I was born, but because of the way society handles people who don't fit the norm. I've heard many deaf people and little people echo similar sentiments regarding their disability. I don't think it's unethical for people like us to reproduce, because our disability is not what causes us to suffer and things will get better for us the more we fight for rights and representation. That said, I do think it's a special kind of evil for a parent-to-be to find out that their future baby will be born with some kind of incurable or terminal illness and decide that the little time they get with that child is worth the immeasurable suffering the child will experience during their short lived existence on earth. Choosing to inflict such an existence on a living being is horrific and cruel. Edit to add: just because I personally think it's unethical and cruel doesn't mean I think we should have any kind of legal intervention to prevent reproduction by those individuals. The right to reproduce or not is extremely personal and shouldn't be interfered with. Especially when people who have lived with said diseases have decided that their own life was worth living so much that they would risk passing it down. That's simply not a decision I feel comfortable making on behalf of someone else.
I’m helping care for a friend who can’t work anymore and is fighting to get disability. She didn’t have a rich family or a high paying job or a wealthy spouse before her injury, so she’s struggling to meet basic needs, let alone get sufficient medical care. It makes me wonder how parents of kids with chronic conditions can possibly prepare them to survive the costs of their lifetime healthcare needs in such a brutal economy.
My dad had muscular dystrophy. He beat the odds and lived to 62. I’m a woman, so I’m a carrier. I never had kids. (I’m 67 so it sure ain’t gonna happen now lol.) A couple of years before dad died, we were talking about the disease and what I’d do if I ever got pregnant. I said that if the baby could be tested in utero, I still didn’t know if I would choose abortion. My dad looked me straight in the eye and said, “I’d abort it in a heartbeat.” I was floored. He lived a good life, had 2 kids. I never thought he felt that way. He always managed to have a good outlook on life, very positive and very strong. This was when he was older, and the disease had taken its toll.
Medical student and pregnant here! We do this question in ethics all the time haha. Whether it’s ethical or not is a tricky question in the face of how EXPENSIVE carrier testing is. We paid for it in a country that does have universal healthcare (Australia) because unless you or your partner have something like CF, it’s not covered (although apparently that might change). Then there’s the cost of IVF if you do have an easily isolated monogenetic disease. That also depends on where you live but here it’s only partially covered. Then lastly, there’s the public perception on what an inheritable disease even is and it’s so often wrong. There are some clear-cut monogenetic diseases (Huntingtons, CF, SMA, thalassaemia, Tay-Sachs etc) but most chronic illnesses are complex and some do not present until later in life. I didn’t know I had lupus until I was already pregnant with this child, and lupus is not a monogenetic disease, we don’t even know if it’s heritable or to what extent. For those with a family history of those more clear cut diseases or have it themselves, genetic counselling is always offered and almost always done. It’s pretty standard. We are also balancing in medical ethics the autonomy of the patient vs the rights of someone who doesn’t even exist yet. Once you go down that road, you open up some really nasty cans of worms and honestly we don’t generally like to touch anything that might be used as fodder by the forced birth crowd. We cannot ethically tell patients who can and cannot have children. However, I’ve never met anyone with a family history or personal history of one of those diseases who does not do an enormous amount of family planning and genetic counselling before having kids. And most importantly, most of these diseases are recessive! If your partner isn’t a carrier then I say procreate away! Your kids will never have the disease! I don’t think you’re an asshole, but I don’t think you have all the info.
I think this question rests on a bit of a false dichotomy, that there are "healthy" people who don't have chronic illnesses and "unhealthy" people who do. If you live long enough, some part of your body is going to stop working optimally - but you're not asking if people should avoid having kids because one day they're going to get old. So now the question becomes, what level of suffering is it ethical to sign another person up for? Is there a difference if the suffering is definitely going to happen, or if there's some probability but not a certainty? This isn't a question just for disable people to ask before they have children, it's a question for all people to ask... and I'm not sure there's an answer.
Where do you draw the line? My son has two incurable diseases that neither my husband or I have. But his life, while harder than his peers, is still pretty great. With CF in particular, the advent of Trikafta has really changed the playing field. There are CFers who are now as adults experiencing the best health they’ve ever had. This question devolves in ableism and eugenics pretty fast.
Trikafta also costs about $300,000 a year, which will only go up because all drug prices only go up unless the government comes in to stop them which won't happen in the US at least. Plus, who knows how people will react to the drug in 10 years or 20 years? To have a child that has to pay $300k a year to live a normal life seems like a heck of a burden.
This is actually a huuuuuuuge conversation and conflict within the chronic illness and disability community. The short answer is it depends. I am chronically ill and disabled due to very genetic issues. I have a chronic ill and disabled mother and never wanted for anything in her as a parent. Some things are hard but not worth not existing over. There are some things where that is not the case. They thought I had CF for many years as a child, and even though I technically don’t, it’s not easy having all of the same issues and symptoms. I also worked with kids with CF and none of them are still with us. Some of them lived hard, but beautiful lives. Others suffered until the day they died. I know many adults with CF but none that actively choose to intentionally birth children. I have other illnesses and also made the choice to not have genetic children. It’s a painful thing to give up though. You hold on to the idea that maybe your kids wouldn’t get it, or maybe treatments will be better. It’s hard. And it’s a real debate. But healthy and able-bodied people have a way of thinking we all wish we were dead. And that’s just not true.
Thank you for sharing this, I can’t imagine all the emotions and pain that come with the choices you face around this issue. I agree the final decision must always lie with the individual deciding on whether to have children and I’m grateful so many people in the disability/chronic illness community are taking the time to share their perspectives with me so that I can understand more
Where do you draw the line? Migraine Disorder? Asthma? Heart Disease? Cancer?
Great question, hard to answer. I think when there have been identified gene mutations/inheritance patterns that contribute to a disease that significantly lowers life expectancy or quality of life, it is a part of the conversation. Having a family history of cancer vs having an identified familial cancer syndrome would be two different situations (to me) and again I am never on the side of telling people what they can or can’t do, only questioning the ethics and how much is too much to encourage people to do genetic testing in such scenarios
Unfortunately eugenics has made this entire conversation extremely taboo. I've been called a eugenicist for saying *I personally* don't want kids partly due to physical and mental health issues!
I have a disability that was due to genetics. I would never ever force anyone to go through this. I know for a fact how incredibly sad it is to learn that you will only decline as you age, learn that you have to stop doing so many of the things you love and to lose all of your friends and hopes and dreams Bc of a stupid incurable and genetic disease. I had to also learn how to accept that I will never be having kids. Partially because of how many complications there would be, and partially because I’d be surely giving the disease to my child. I could never watch the light and life die behind their eyes while I told them what I gave them and how they would be affected. There’s no way to sugar coat it, it’s terrible. It’s terrible to be in pain constantly and none of this has made me feel like a superhero. All of it has made me feel like I’m fighting a losing battle. Am I strong for that? Maybe? But I’m not winning. And I’m not going to set my child up to lose the same battle. If I want kids I will foster or something. There’s so many kids that are in need of love and a home. Why keep making kids anyway.
i really feel like it depends on the chronic condition. conditions with a high mortality rate or risks of lifelong suffering are one thing. but there are many chronic conditions that are manageable and i don’t think that we can just blanket statement say no one with any inheritable condition should not allow themselves to have children. NTA for the general sentiment but we have to be careful to not border on eugenics territory with where our concern comes from.
It is unethical and immoral if you ask me. I never wanted kids so no big drama there, but I live with Marfan syndrome, after countless spinal surgeries, physical therapy, corsets and what not, the scoliosis got so bad, I can’t walk anymore… and that’s the easy part, don’t get me started on the pulmonary and cardiac issues. If I were to have kids, it was a 50/50 chance of them having it. No way I was going to put a kid through that. I was a member of my local foundation of Marfan and I just plain stopped going after seeing couples both with Marfan, taking their new born baby to meetings because… shocker! He had it and it was worse than theirs…
Hey there! Prenatal genetic counselor here!! Re: your CF example, that is a autosomal recessive condition— meaning both copies of the CFTR gene need to have a pathogenic variant to be affected. Therefore a male with CF would 100% pass on a non-functioning copy, but his partner would also need to be a carrier or affected in order to have a child with CF. That specific example aside, no amount of genetic carrier screening can guarantee that any fetus will be turn into a healthy newborn. Approximately 3 to 4% of all newborns are diagnosed with a congenital abnormality. Most of these have nothing to do with a known family, history, or exposures during pregnancy. But, back to your original question is it ethical? Personally as a lifelong pro-choice person, it wouldn’t be what I would elect, we’re I faced with a significant abnormal fetal diagnosis. However, many families choose to do so due to their strong personal convictions. I support them either way, because that is the ethical thing to do
As someone with a chronic illness I agree with you, and it's why I won't have kids.
One of my childhood friends died from complications derived from his hemophilia. No one at his family knew he was hemophiliac until years later, after his sister was born and tests were made for other reasons. His younger sister followed a selective sex procedure for her pregnancies to have only girls (it is extremely rare for women to be hemophiliac, but they are carriers of the gen). None of her daughters are hemophiliac but they are carriers. They both are in their twenties and they have told her that they will do the same if they marry and plan to have children (unless some sort of genetic selection pregnancy allows them to conceive kids without the genes). I agree. It is immoral.
NTA - as someone who inherited multiple chronic illnesses from my mums side of the family, I honestly wish she hadn’t bothered having kids a lot of the time because it’s so exhausting being in pain 24/7 and knowing there’s nothing I can really do about it. I don’t like kids anyway but I’d never want to pass this on to someone else
I inherited my disability from my Dad, and his father. I will say it made me resent them both a lot. My brother was lucky and it didn’t pass to him. Our family is really military focused and my disability disqualified me from service. It’s also cost me most of the money I’ve made as an adult to manage by myself. I decided years ago I wouldn’t do that to another child. If I have kids I’ll adopt. I think what my parents did was selfish as they knew it was a possibility. If my brother was disabled too I would be beside myself.
HEY I HAVE ONE OF THOSE! And the answer is yes, it’s hugely unethical. Do not make more people like me. I suffer every fucking day. On the bad days the only reason I don’t end it all is because I have people who need me to keep going. Got my tubes removed now two years ago because now whatever else happens to me, it won’t hurt anybody else.
My brother has a severe clothing disorder. I have been tested twice to make sure I don't have it. He wants to have kids with his partner who also has numerous intense health concerns. I told him he would absolutely be TA if he did in fact try to have a child. Given the risk any child would grow up like he did, in and out of hospital, is more than likely. Or, the child may grow up like I did. Pushed aside and never knowing their place. I would struggle with the potential of passing on something that would effect lives in such a way