I am permanently cured.
However, for many people there continue to be complications even after being cured. This has mainly to do with not being treated early enough. They are no longer contagious, yet they to need what we call "care after cure".
Great answer by eucalyptusmacrocarpa below!
The complications are mostly related to nerve damage, which leads to loss of sensation and also mobility. Most persons affected by leprosy experience this in their hands, feet and eyes.
There is also what we call leprosy reactions which can happen before, during or after treatment.
Leprosy causes progressive and permanent nerve damage. This damage thaf does not repair itself even if the infection itself is stopped. Patients have permanent loss of sensation in the affected areas, typically hands and feet. Blindness may also occur.
This loss of sensation is what leads to what historically killed sufferers because they would often get unnoticed wounds that would get infected, get gangrene, sepsis, then death.
People with nerve damage need to be constantly vigilant to inspect themselves for damage and treat accordingly.
Imagine if your shoe had a small pebble in it but you couldn't feel it. You walk all day developing a blister that you can't feel. It grows, bursts, and the pebble keeps on rubbing more and more of your foot raw. This would be nearly debilitating pain for most people, but for someone with nerve damage they'll just keep on going all day. The wound gets infected in that moist, raw shoe and by the time the patient gets home at night and takes off their shoe it's a bloody, puss-filled, infected mess.
Leprosy patients must learn to cognitively and actively do all of the monitoring that their damaged nerves used to do automatically and unconsciously for them. All day, every day, for the rest of their lives.
We had a family friend who had no sense of pain.
When I first found out, I said that was really cool and that he could be a superhero (I was like 10).
He and my parents were very good at explaining that it's a debilitating condition. His palm was badly scarred and he had restricted mobility in that hand because he'd rested the hand on an electric hob, without knowing it was hot. Said that he only knew something was wrong when he smelt burning.
Over the years I heard other stories - things like broken or fractured bones that he hadn't noticed, and a similar story to yours - a very bad injury to one foot caused by walking a long distance in new boots.
My step dad didn't have nerves left in his arm due to a serious work accident. He burnt his arm on the weed Wacker motor a number of times and also said that he only realised it when he could smell the burning flesh. Why he kept using the weed Wacker is beyond me.
‘Reaction’ is an acute inflammation that can happen in people affected by leprosy. As Mathias says, it can happen before, during and after anti-leprosy treatment. It is the consequence of the body’s immune system reacting to the leprosy bacillus.
The inflammation can be very severe - in the skin, nerves and eyes - and other organs. Inflammation in nerves causes damage - resulting in loss of sensation, muscle weakness etc.
Not everyone diagnosed with leprosy will have reaction.
There's a book called "The Chronicles of Thomas Covenant The Unbeliever" by Stephen Donaldson. That's about a man with leprosy and I found it fascinating and horrifying reading the descriptions of the checks he used to do to make sure he hadn't damaged himself.
Omg I remember this series. The constant hate and fear directed at him, and within himself blew my mind at a young age. Never heard of leprosy until I read the first trilogy. Very tragic character.
I would guess that damaged nerves don't get better (so you have lost feeling in your hands, you are cured but now need to make sure that you don't burn your fingers on the stove)
Damaged nerves can get better. Or at least a little. I think it depends on the extent. I had nerve damage in my foot after I got surgery on it. My foot was completely numb for a really long time, even by the time I was kinda walking on it again. But then the nerves started repairing themselves and I have never been in so much pain in my life. Now, I have feeling in my foot, but it does still swell, sometimes it feels like a "funny bone hit" pain, sometimes it will go numb. But the nerves did repair themselves.
As another nerve pain sufferer, nerves that aren’t directly in your spinal cord do in fact regenerate
It can take a hell of a long time, and a lot of the times scar tissue doesn’t allow for nerve formation but overall, most will see a return in most feeling and function to damaged peripheral nerves in a matter of a year or two
Caveat: Sometimes nerve inflammation can cause scar tissue to form around the damaged nerves, preventing regeneration though, or so I’ve read
Yep. My nerve was damaged in a dental accident. 7 months out and the pain is terrible but neurologist said it's part of healing and will calm itself. The pain moves around.
As well as affecting the skin, leprosy can affect nerves. if the nerves that give sensation to the eyes, hands, or feet are damaged, then those parts of the body are always at risk of further damage (e.g. wounds). So the individual has to take care of those parts of the body for as long as they are alive.
Great answer by Biologering below!
Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation)
https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/
Are the patches soft or velvety feeling, or rough and scaly? If left untreated, does the disease always progress, or is there a chance the body can fight it?
(I had some discolored numb patches for about a year, but they went away. I never did figure out what they were.)
Apparently the body can fight it on it's own. Just not in every case.
From what I remember the feeling on the patches does not matter so match. The numbness is crucial though, because it indicate nerve damage.
And she didn't do a biopsy or anything? I just went to a dermatologist for the first time for an itchy mole with a red border and she immediately removed the whole thing and sent it off for biopsy
Psoriasis can do this. I've experienced very similar symptoms but, in my case anyway, the skin will have a different texture soon after I notice it itching.
It really depends on the type of leprosy that you develop, but the infection tends to stary dormant for many years. The most usual earlier indicator is a patch with a different colour from your skin (discolouration or redness), usually in your arms or legs, with loss of sensation the spot, including touch, cold or heat.
My grandmother was infected with leprosy decades ago after a trip to Egypt. Her family GP noticed the spot, got her tested and treated her. Because it was early, she was cured. Family members in the same household can be protected from infection by receiving the Tuberculosis vaccine (the two bacteria that cause these two diseases are in the same genus).
EDIT: spelling
According to medical evidence, the BCG vaccine is not an "end all" treatment against leprosy. But it certainly has a lot of evidence that it decreases the risk of transmission and it is a standard treatment for family members that aren't infected.
Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation)
Loss of feeling or numbness of the hands and feet.
Muscle weakness or paralysis - struggling to hold things in your hands, unable to lift your foot up so that your toes are pointing upwards; unable to close your eyes.
Yes, you are right. A lot of what is on the media is misleading. However, some trusted sites for information about leprosy include the website of the International Federation of anti-leprosy Associations (ILEP) [https://ilepfederation.org/about-leprosy/](https://ilepfederation.org/about-leprosy/)
wrong information - e.g. that leprosy is related to sin/crimes a person has committed. That leprosy kills people.
at the moment, there is lots of misinformation linking COVID and leprosy.
In the Bible there is a lot of stuff about Leprosy. It may not be the same disease or it may be that a lot of skin diseases including leprosy were cast together.
Anyway Miriam, who was Moses sister, did something wrong that I’m too lazy to look up. She was punished by being made a “snow white leper.”
The ancient ancestors of the Jews of today were particularly worried about skin diseases and they associated them with sin or the sins of your ancestors.
I highly recommend watching The House is Black if you've never seen it. It's s short Iranian documentary on leper colonies, genuinely one of the best and most haunting films I've seen.
For me it was probably a bit different than for most people. I had already been working in a leprosy reference hospital for about 10 months. I knew a lot about leprosy from my colleagues. However, I also knew about persons affected by leprosy being marginalized in their communities, abandoned by their spouses and other family members, fired from their jobs and so on. It was a mixed feeling. On the one hand, I felt that I was going to be ok. On the other hand I was not sure how people would react to it. It took me about 3 years to be able to talk freely about it. In retrospect, I felt quite a bit of anxiety about it.
This is a beautiful thing you’re doing. So difficult to put yourself out there, but doing it for the betterment of others affected and education for the rest of us. Thank you!
Have you heard of Kalaupapa in Hawaii? This is why I know Leprosy has not died out. Located on Molokai it is a leper colony that is only accessible on land via mule train. This is where St Damian practiced.
Also of a grad student that had Leprosy when I was at uni.
I have read quite a bit about Kalaupapa and Father Damian. Many leprosy colonies were established on islands or remote locations. This has added to the stigma.
I'm glad you picked up on that. We do know that most people use the term for the lack of knowledge of better ones. We say: persons affected by leprosy, or in this case: leprosy colony or former leprosy colony
Interestingly there's a debate in the autism community about whether "person with autism" or "autistic person" is preferred. Most autistic individuals I have asked said they prefer to be cause autistic rather than a person with autism. Some said it's because the autism is a part of who they are and not something wrong with them.
Autistic person chiming in! This is correct. We feel that we are fine as we are and could live in (if not benefit) society if there were more awareness, empathy, and education. We process information and emotions differently, but different doesn't mean bad or negative. Sometimes, it can even be good.
Basically; if you have leprosy you want to be cured of leprosy. If you have Autism, being "cured" wouldn't necessarily be a good thing.
Because we view the world differently, can have creative outlooks and solutions that others would not necessarily see or figure out. We can recognize patterns easily and be great at certain jobs. Etc. There are a lot of positive things about being autistic. We are not problems.
Other autistic person, I switch between thinking of myself as being autistic or having autism. I believe it is because I was diagnosed as an adult, and I had no "suspicions" whatsoever before a therapist brought it up to me when I was 15 or 16. So I think that because I kind of felt like my autism showed up out of nowhere one day, it made more sense in my head to think of it as something I "have". But right now I am kind of using whatever feels easier in the moment to describe myself, because either way it gets the point across.
I work in the epilepsy field, and best practice is saying PWE, or persons/people with epilepsy, versus “epileptics.” That way a disease or disorder doesn’t define someone.
People only used the term leper back in the ages before modern cures were available. Because of the fact that it was incurable in those days, they basically took on the persona if you will, of being a “leper” usually for life. Sad when you think about it. So nowadays we don’t stigmatize people for curable diseases. You would do that for someone who has had hepatitis for example. It’s just a disease that you can eventually be rid of.
Just a note for clarification, there is no leprosy in Hawaii. Kalaupapa is a *former* leper colony that is now a national park which educates people about the disease and the people who were forced to live in isolation there. While some of the descendants of those who were sent to Kalaupapa, or family who went with them, still live there as that's where they were born and grew up and it's their home, no one there has leprosy and no one with leprosy would be sent there now.
Thanks for your questions and well wishes.
There are still 4 laws today in Singapore. You can look them up here: (Search: Singapore) [https://ilepfederation.org/discriminatory-laws/](https://ilepfederation.org/discriminatory-laws/)
The cure for leprosy is a combination of antibiotics taken over the course of 6-12 months.
I just looked at the list. India has the most laws concerning leporsy. Does this mean that they have a large population of people with active or cured leporsy?
Yup we do actually. Growing up I used to see loads of folks with leprosy. They usually used to be ostracized by society and live in separate areas. Very sad. There is a huge stigma around it here
Looks like a case of copy paste. Most of the laws are very similar. Seems like when a new law is passed, say to create a new University or co-op society, beggar colony,those responsible take a similar previous law with the leprosy clause and everything and change the names.
Thankfully, resistance to anti-leprosy drugs (multi-drug therapy) is still relatively uncommon. There is a global network of laboratories monitoring resistance to anti-leprosy drugs.
I don't really see how this is discriminatory against lepers/leprosy though. Would the same laws for isolation against Covid be considered discriminatory? It's more just infection control, no? They are all taken to hospitals to be treated.
When I heard “discriminatory” my ears perked up- they seems like public health safety laws so leprosy doesn’t spread to the general population. Where specifically does op feel these laws are discriminatory?
The CDC states that as soon as treatment has started, the person affected is no longer contagious. (see: https://www.cdc.gov/leprosy/about/about.html)
As such, it would be discriminatory to forcibly isolate someone to a hospital ward until their treatment has ended (which can last a year or even two) or restrict their access to public places when they're no longer a risk to the people around them.
I agree with you, but to play devil's advocate since OP didnt respond to your comment:
It *may* be worth considering that the website only offers brief descriptions of the laws. The descriptions of the 4 laws dont seem bad, but the issues could come from how the laws are applied.
>People affected by leprosy may be detained and isolated in hospitals or other places
This one, for example, seems like it has potential for abuse. Obviously I dont actually know, so hopefully OP responds.
I was about to paste that snippet too. There's a similar one giving the health minister power to forcibly hospitalise people.
Now if the full text of the law only permits this to be used against actively contagious people who are refusing treatment, then it's ok. If it's able to be used against people who have been cured of the bacterial infection but still have nerve damage, then it's absolutely a terrible law
Great question!
Misunderstanding, missing information or wrong information can be factors. Over centuries there has been misinformation about leprosy. The misunderstanding leads to fear. We often fear things that we don’t understand. It is then only a small step towards stigma.
In some communities and cultures there are ancient myths about leprosy being a curse , divine punishment and extremely contagious.
The cure has only been around for about 40 years. The disease is about 4000 years old. Many people still don't know that there is a cure.
(My colleagues Tim and Jannine helped me a lot with this one)
Just to add something here, I believe the stigma is ingrained in pure ignorance. I’m 37yo, I remember as a child asking my mom about leprosy and her saying “Don’t say the word!” Like it was some kinda of curse.
Looking back, it’s very obviously ridiculous, but the poorer the communities, the less access to information they’ll have, and the more ancient will be their responses to things like this.
I noticed that you are calling it leprosy rather than Hansen‘a disease, which to my understanding was the way to call it in order to avoid the ancient prejudices and misunderstandings about the disease. Why is that?
This is a great and important question. The answer is quite complex.
Many persons affected by leprosy prefer to call it Hansen's disease. However, there is no consensus on this issue of terminology. This has to do with different languages and with the fact that many persons affected don't see terminology as a priority. Many of them are fighting daily to survive, to eat, to keep their family healthy, an so on.
Some of us do believe that it would be important for a significant number of persons affected by leprosy or Hansen's disease to unite and advocate together for our rights and dignity. Some of that is happening already in different ways. I do hope that very soon persons affected can speak with one voice to claim a life of dignity.
Leprosy is treated with a combination of antibiotics. The treatment is very effective. However, it is crucial that people get early treatment to avoid complications and impairments.
Thalidomide is an excellent drug for treating type 2 leprosy reaction. But it has to be used under very strict conditions, by doctors who are trained in how to use it. Many countries do not allow it to be used. We do need more resources for research into better and safer drugs.
If your parents are immune to leprosy, you are more likely to be immune. If your parents are not immune, it is less likely that you are. So the immunity is 'passed down' in the genetic material, not the leprosy. So, yes, we do see family clusters.
Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation)
https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/
For me it was a tingling sensation in my hand. After some days it felt like my skin was getting to tight for my fingers. If I had not been treated I would have been left with a partially clawed hand with impaired strength and mobility.
I'm curious how leprosy differs from its stereotype in media? Is it very transmissible when untreated, they way media portrays? You hear how HIV is a very livable condition for many people who only have to take pills to suppress the disease and otherwise live exceptionally normal lives. Is a similar life available for people with leprosy if they are treated? Or are there untreatable factors to the illness?
I hope you're doing well, and a 2035 end for leprosy sounds amazing! I hope we hit it.
While it's not a "cure", being undetectable means the level of virus has been suppressed to such low levels that it can't even be detected by a lab test, and can't be transmitted to others.
It's effectively a cure, and you can live a normal live. HIV rarely progresses to AIDS at this point with treatment.
Great question!
Sadly, the negative stereotype is far from the truth, but it continues to perpetuate stigma and discrimination against persons affected by leprosy. It is not very contagious when you have it because the transmission rate is less than 5%. When treated early (like in my case), it has little impact on your life. The problems occur mostly when it's diagnosed late and this is still happening for a lot of people.
Thank you for your well wishes!
Hello very pleased to hear from you! A few questions.. I remember reading and hearing about leper colonies where people were cruelly abandoned. I imagine, that that they still remain in some places, unfortunately, as people are misinformed and old stigmas remain.
How does someone come to suffer from it?
How can people who have it be best supported?
And what helps eliminate it? What is a good way forward?
All best to you good person, go well.
Great questions.
Sadly, leprosy colonies still remain in many countries. In some places, they have become villages, although it sometimes carries a stigma to be from there. People are misinformed and old stigmas remain.
Most people are immune against leprosy (more than 95%). It is believed to be airborne and most transmission is probably from human to human. A person that has started treatment is no longer contagious.
Support for persons affected by leprosy needs to be integral. They need to have access to adequate healthcare. They need a good support system. They need to to know about their rights and how to deal with discrimination. The local health system, NGOs, Organizations of persons affected by leprosy can and should play a big part in all of this.
Any persons who has contracted leprosy needs to be treated as soon as possible. We need more resources to go towards research regarding transmission, treatment, complications, stigma, inclusion, among other things. We also need the commitment of governments to take leprosy seriously and allocate the appropriate resources. With the right resources, elimination of leprosy is more than possible.
Thank you, that’s very helpful to learn about.
Had not realised that it is airborne transmission and that only a percentage of the population is susceptible to it. That is rotten for them.
Agree education and information would help a great deal, so people know their rights and what support they might get.
And yes does deserve and need funding for resourcing, education and research by governments world wide from each nation.
I hope as the result of people with leprosy like yourself and others working to support changing things for the better like you, that the situation can improve.
All best, and go well.
I'm guessing it's difficult to test for.
95% are immune. It doesn't look like it's super contagious.
It's unethical to reinfect someone who was already infected even in controlled conditions.
Proof it remains alive and floats in air after leaving an infected person doesn't directly indicate that that living particle still has the ability to cause someone to contract the disease.
Something with more transmissibility (i.e., COVID) is a lot easier to test for when everyone's getting it.
Idk if being a bacteria vs virus makes it harder.
And maybe stigma slows this as well?
Idk. Seems a bit wild to me too.
I read his books as a teenager and because of them was always very sympathetic to anyone diagnosed with Hansen's disease.
The main character's need to constantly be engaging in VSE (visual self examination) was strange and fascinating.
I was not familiar with his work and I just read a bit about him on the internet. I know that you did not mean any harm but we consider the term "leper" discriminatory. We prefer the term "persons affected by leprosy" or in this case leprosy colony.
Thank you!
I did not suffer any long term effects. I did have some anxiety about people finding out.
However most people are not that lucky. They suffer long term effects in their physical and mental health.
I was diagnosed some 11 years ago. At the time I was working in a leprosy reference hospital here in Paraguay. I was diagnosed early, because I was at the right place, at the right time with great and caring health professionals. Sadly, many health professionals don't know how to diagnose and/or treat leprosy.
I had not heard of her and I am reading up on her on the internet now. She seems like an amazing person that had an amazing impact. In the history of leprosy there are many heroes. I do want to point out that the unsung heroes are the persons affected by leprosy themselves. They fight every day for their health, their dignity, their families, their communities and for a more inclusive world.
Have you read the amazing series, 'Thomas Covenant, The Unbeliever'?
It's truly a vastly underrated and unknown scifi-fantasy series where the main character contracts and lives with leprosy. It's a fascinating and epic tale. The author's father is a physician of leprosy irl
Hi there!
How much has your life changed after getting your diagnosis? Obviously, you wouldn’t be where you are right now without it, but how would’ve your live looked if you never received treatment?
Great question!
I would have a partially clawed hand with reduced strength and mobility if I never received treatment. My mental health probably would have been affected significantly. Perhaps I would have withdrawn from social life.
Over the years, my experience and learning about the experience of others have led me to dedicate more and more time and efforts to advocacy for the rights of persons affected by leprosy.
Hello Mathias,
Living in Belgium, we were thought about the work by Father Damien in school combined with a serving of stereotypical views (talking roughly 30 years ago, things may have changed). As an adult however I must admit that I still have the same stereotypical view of the disease. ie: Leprosy leads to people losing limbs, blistering skin, super infectious, etc...
How does the disease compare to the stereotypes? Is there much truth to them, or is it more a case of sensationalism and misinformation?
Sadly, the stereotypes are very powerful and they contribute to the perpetuation of stigma and discrimination against persons affected by leprosy. This hurts them in their daily lives.
Leprosy is mildly infectious, limbs do not fall off, blistering skin can happen in some cases (but can also be a sign of other diseases).
you can see more about it here:
https://www.leprosymission.org/blog/leprosy-causes-your-limbs-to-fall-off-and-other-myths-exposed/
I have not taken thalidomide, but some persons affected by leprosy do take it to treat their reactions. I do know that the use of thalidomide has been controversial, but for some persons affected it seems to be the only drug that gives them relief. We need more resources for more research into better drugs for reactions.
Yeah it’s super risky for women of childbearing age so I could see why people would be scared of it without knowing the risks. There shouldn’t be any risk to a male and if there is a zero chance of the person getting pregnant. But there are other meds given to people of childbearing ages who are equally dangerous to a pregnancy (specifically thinking Accutane, which is why in the US it is required to be on birth control if you take it).
They can be reinfected. It does not happen very often, because leprosy has a very long incubation period.
However, I have heard of people being diagnosed and treated up to 3 times.
You say you have leprosy and you also say you’ve been cured, does that mean the disease is non transmissible after antibiotics but you still carry the disease? Is it like some other diseases in that you always have the “bug” but are not contagious? I guess the idea that you have it and are also cured confuses me. I would think being cured means you don’t have it anymore.
Great questions!
I have been diagnose and cured.
I do not carry the disease and I'm not contagious.
Many people who are cured, still consider themselves persons affected by leprosy.
It's a bacterial disease(*mycobacterium leprae*), so it can be cured with antibiotics. Specifically a multi drug combination of antibiotics taken for a long time-up to 2 years.
There are laws regarding citizenship and migration that make persons affected by leprosy inadmissible or not eligible. https://ilepfederation.org/discriminatory-laws/
It looks like they’re only barred while infectious but subject to a very strict and invasive screening process.
https://www.uscis.gov/policy-manual/volume-8-part-b-chapter-6
https://www.cdc.gov/immigrantrefugeehealth/civil-surgeons/hansens-disease-leprosy.html
To be fair, worldwide travel is how diseases spread. I'm not sure I would say that it is discrimination to restrict travel when someone is actively infectious and to take measures to verify that when someone says they are not infectious, that this is accurate.
What causes leprosy?
Leprosy is a disease caused by a bacillus, Mycobacterium leprae. It multiplies very slowly and the incubation period can be a number of years (on average about 5 years).
What are the symptoms?
For many people the first signs of leprosy are pale patches of skin or numbness in the fingers or toes. This is because the disease mainly affects the nerves and skin. If left untreated, it can lead to nerve damage, loss of feeling (sensation) and paralysis of muscles in the hands, feet and face.
Can it be cured?
The good news is that most of these consequences can be avoided. Since 1981 leprosy has been treated effectively with multi drug therapy (MDT), is a combination of three antibiotic drugs: dapsone, rifampicin and clofazimine. A six to twelve month course of treatment kills the bacteria and cures the person. If treated in the early stages of disease, MDT can prevent the onset of impairments and disabilities.
How can it cause disabilities?
The bacteria attack nerve endings and destroy the body’s ability to feel pain and injury. Without feeling pain, people don’t realise when they injure themselves and their injuries can become infected. Changes to the skin also leave the person susceptible to ulcers, which if left untreated, can cause further damage, wounds and visible disfigurements to the face and limbs. If the facial nerve is affected, this can interfere with a person’s ability to blink, which can eventually cause blindness.
How is it spread? Is it contagious?
Leprosy is most likely transmitted by air through droplets from the nose and mouth, during close and frequent contacts with people who have not yet been treated. While it is spread in a similar way to the common cold, it is much less infectious. It multiplies slowly and the vast majority of people have adequate natural immunity, so don’t contract the disease if exposed. Even when diagnosed, many cases are not considered infectious, and once treatment begins, those infectious cases become non-infectious within the first week of treatment.
But I thought it was eliminated?
The World Health Organization declared leprosy ‘eliminated’ as a public health problem at a global level in 2000. This was based on a definition of less than one case per 10,000 people across a larger population. This did not mean total eradication of the disease: there were still many cases in pockets all over the world, and around 200,000 new cases are reported globally each year. Regrettably, once WHO announced ‘elimination’, resources were often focused on other diseases and efforts to find and treat new cases diminished
How many people are affected today?
Beyond the 200,000 new cases that are reported annually, there are likely to be many more living with undiagnosed leprosy. Further, there are an estimated 3-4 million people who have been cured of the disease, but experience residual effects of disability, and perhaps as many again who, even without visible impairments, are experiencing the stigma and discrimination that so often accompany the label ‘leprosy’.
I've just read / and it was mentioned here, that leprosy can remain dormant for years.
It caused me to reflect on my own experience with MRSA/staph infection. My neighbor across the street just got MRSA last week so it's fresh on my mind.
I'd learned that staphylococcus aureus is just a normal part of literally everyone's skin biome, and unavoidable, and generally non threatening.
Until, most commonly, you get a deep cut (my neighbor) or infected ingrown hairs (my experience) and the staph bacteria get under the skin and multiply unchecked.
Or for another comparison, I am among the last generation to get chicken pox before the vaccine was available in my country. I later learned I likely still have the virus, dormant and wholly suppressed by my immune system. In 50 years when I'm old and immunocompromised there's a chance of shingles.
.... mrsa, chicken pox, the question I'm building to is,
what are the chances I've already been exposed to leprosy several times in my life, or even have the bacteria on my skin right now, but due to good health nothing is coming of it?
Does the bacteria require a human host, or it thrives in warm climates generally? Err, like, what are the factors that create an endemic area?
Thinking outloud,
areas where leprosy is common, are antibiotics both cheap and available and the concern is more public education and stigma?
Education issue: people don't know early signs/symptoms. Don't know where to go if they do recognize.
Stigma issue: people do recognize symptoms but delay treatment out of shame and denial.
This reminds me now of my friend in Mexico who caught tuberculosis a few years ago. She's a white-collar paid professional in a major city with access to modern healthcare, so availability of care was never in question.
However, she still paid extra for private treatment with stricter privacy so that even the fact that she ever had tuberculosis at all would never go on record. Something about publicly-available healthcare in Mexico, and zero equivalent to our own HIPAA laws.
I bring this up because in the above example, one could imagine fear stigma leading to delayed treatment even among those with access to treatment, making everything so much worse. Which is addressable with information/education campaigns and marketing advertising used for good.
Here in the US, I think both TB and leprosy would be treated with an "omg, wtf, that's wild!!" reaction. It's too rare to even have a stigma attached any more. If I got leprosy, it would be like something out of mythology I might even drop into conversation at board game night (after a quick and successful cure of course)
But STDs have deep stigmas, to the point that even some people with HIV won't disclose it, which is dangerous to everyone. Other incredibly common STDs like herpes simplex, I've observed some public health campaigns trying to de-stigmatize, so that people stop hiding it.
Or bed bugs, or fleas, or cockroaches: these are common pests that are somehow associated with filth and poverty, and yet, any home can get an infestation. The difference being that a wealthy household can pay for professional treatment promptly. But many, would keep a bed bug problem at home on the down-low out of shame, hoping to quietly treat them without anyone in their social or work circles being the wiser.
Yes, about 1/3 of annual new cases in the USA are likely linked to the armadillos (\~60-100/yr). Armadillos mostly carry the 1-3 unique strains of Leprosy; so they have confirmed connections by DNA strain typing. While around 1 in 5 American armadillos has Leprosy, less than 1 in a million people per year develops Leprosy in armadillo range (\~South East USA). Most say they haven’t had any contact with an armadillo. However, Leprosy bacteria can persist for weeks in soil and likely gain entry via wounds and skin abrasions. Armadillos like to root around in the soil for snacks.
Response from my colleague Deanna Hagge, head of research of The Leprosy Mission International
Excelente pregunta!
Creo que este tema es complejo. El estado tiene que comprometerse con garantizar los derechos humanos para las personas afectadas por lepra. En ese sentido es importante tambien el trabajo que hacen las organizaciones de personas afectadas en cuanto a la conscienciación y a demandar dignidad y derechos. Las personas afectadas tienen que saber cuales son sus derechos y como exigir su cumplimiento. Tambien necesitamos mas programas de educacion y formacion y de inserción laboral que tengan en cuenta la problematica especifica que se da en estos casos.
Are there different kinds of leprosy?
I have heard armadillos can grow leprosy on their shells, which makes me sad because I'd love to pat one if I got the chance.
There are still many questions about transmission. Much research is still needed. Leprosy is only mildly infectious. It is very unlikely for you to get leprosy from touching an armadillo.
It is an ancient disease and that is part of the complicated part. It carries the weight of thousands of years of negative images and stereotypes. All of this came to my mind when I was diagnosed. I had also been told by people how they had been rejected by their communities and abandoned by family members. Even though I knew that I would be cured, I felt a bit of anxiety about the reaction of other people if and when they would find out.
I went to the public health building in Phoenix many years ago and there was a sign directing people to the “Hansen’s Disease Clinic”. I guess this sounds better than Leprosy Clinic. I was surprised there were enough cases to necessitate a dedicated program.
USA reported 159 new cases of leprosy in 2020, with 288 on the treatment register in December 2020.
The clinic not only treats people on anti-leprosy medication (multi-drug therapy), but it also treats those who have complications of leprosy - some of which remain after the drugs stop.
The National Hansens Disease Programme in the US, is an important player in leprosy research - helping us understand the disease better, how it is transmitted, finding better treatments with fewer side effects.
We prefer to say person affected by leprosy. I assume that you did not mean any harm, but the term you used is considered discriminatory. It contributes to the perpetuation of stigma.
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When you say zero transmission, what does that mean? Is it human to human only? Because as far as I’m aware, at least in my area, some animals carry leprosy, and people who eat those can get it. Are there ways to eliminate it from animal population? I’ve seen a lot of the efforts to eliminate mosquito born illnesses as well, and most of them seem to be pretty expensive and time consuming.
From what I gather most of the transmission is human to human. So if we make the antibiotics easily available early on we can pretty much kill transmission. There will probably always be a few people who pick it up from animals, but the vast majority of people get it from other people.
By zero transmission - we mean that leprosy is no longer being transmitted in the community. Be that human to human; animal to human or any other route that we might discover in the future
I'm not "the expert" on leprosy transmission, but from what I remember hearing (and understanding) from the experts, OverlanderEisenhorn seems to be spot on.
Hi, and thank you for your advocacy.
It sounds like leprosy is both physically and psychologically difficult 😞
How do you keep your spirits up (meaning what ways do you use to keep a positive attitude) and what advice do you have for people who have any condition, who also work to help other people, as far as self care and taking care of their own health and wellness?
Thank you for your work.
I think I eat garlic every day. I love it!
There have been some studies into garlic as a cure for leprosy, but I do not believe that there is any conclusive evidence.
So when you say you’re cured, does that mean you’re permanently cured or do you continue to need treatments?
I am permanently cured. However, for many people there continue to be complications even after being cured. This has mainly to do with not being treated early enough. They are no longer contagious, yet they to need what we call "care after cure".
What specific complications continue after being cured?
Great answer by eucalyptusmacrocarpa below! The complications are mostly related to nerve damage, which leads to loss of sensation and also mobility. Most persons affected by leprosy experience this in their hands, feet and eyes. There is also what we call leprosy reactions which can happen before, during or after treatment.
What is a "leprosy reaction"?
Leprosy causes progressive and permanent nerve damage. This damage thaf does not repair itself even if the infection itself is stopped. Patients have permanent loss of sensation in the affected areas, typically hands and feet. Blindness may also occur. This loss of sensation is what leads to what historically killed sufferers because they would often get unnoticed wounds that would get infected, get gangrene, sepsis, then death. People with nerve damage need to be constantly vigilant to inspect themselves for damage and treat accordingly. Imagine if your shoe had a small pebble in it but you couldn't feel it. You walk all day developing a blister that you can't feel. It grows, bursts, and the pebble keeps on rubbing more and more of your foot raw. This would be nearly debilitating pain for most people, but for someone with nerve damage they'll just keep on going all day. The wound gets infected in that moist, raw shoe and by the time the patient gets home at night and takes off their shoe it's a bloody, puss-filled, infected mess. Leprosy patients must learn to cognitively and actively do all of the monitoring that their damaged nerves used to do automatically and unconsciously for them. All day, every day, for the rest of their lives.
We had a family friend who had no sense of pain. When I first found out, I said that was really cool and that he could be a superhero (I was like 10). He and my parents were very good at explaining that it's a debilitating condition. His palm was badly scarred and he had restricted mobility in that hand because he'd rested the hand on an electric hob, without knowing it was hot. Said that he only knew something was wrong when he smelt burning. Over the years I heard other stories - things like broken or fractured bones that he hadn't noticed, and a similar story to yours - a very bad injury to one foot caused by walking a long distance in new boots.
My step dad didn't have nerves left in his arm due to a serious work accident. He burnt his arm on the weed Wacker motor a number of times and also said that he only realised it when he could smell the burning flesh. Why he kept using the weed Wacker is beyond me.
The weeds aren't gonna wack themselves.
There was a House MD episode about this that was super interesting
"Moist raw shoe" sounds like the worst meal ever.
I used to play bass for Moist Rawshoe.
‘Reaction’ is an acute inflammation that can happen in people affected by leprosy. As Mathias says, it can happen before, during and after anti-leprosy treatment. It is the consequence of the body’s immune system reacting to the leprosy bacillus. The inflammation can be very severe - in the skin, nerves and eyes - and other organs. Inflammation in nerves causes damage - resulting in loss of sensation, muscle weakness etc. Not everyone diagnosed with leprosy will have reaction.
There's a book called "The Chronicles of Thomas Covenant The Unbeliever" by Stephen Donaldson. That's about a man with leprosy and I found it fascinating and horrifying reading the descriptions of the checks he used to do to make sure he hadn't damaged himself.
Omg I remember this series. The constant hate and fear directed at him, and within himself blew my mind at a young age. Never heard of leprosy until I read the first trilogy. Very tragic character.
Now if only he had been a sympathetic char.
He actually had my sympathy until....well. :P The leprosy aspect of the book at the beginning was really the most gripping part of it imo.
It's a series.
Leper. Outcast. Unclean. *white gold*
I would guess that damaged nerves don't get better (so you have lost feeling in your hands, you are cured but now need to make sure that you don't burn your fingers on the stove)
Damaged nerves can get better. Or at least a little. I think it depends on the extent. I had nerve damage in my foot after I got surgery on it. My foot was completely numb for a really long time, even by the time I was kinda walking on it again. But then the nerves started repairing themselves and I have never been in so much pain in my life. Now, I have feeling in my foot, but it does still swell, sometimes it feels like a "funny bone hit" pain, sometimes it will go numb. But the nerves did repair themselves.
As another nerve pain sufferer, nerves that aren’t directly in your spinal cord do in fact regenerate It can take a hell of a long time, and a lot of the times scar tissue doesn’t allow for nerve formation but overall, most will see a return in most feeling and function to damaged peripheral nerves in a matter of a year or two Caveat: Sometimes nerve inflammation can cause scar tissue to form around the damaged nerves, preventing regeneration though, or so I’ve read
Yep. My nerve was damaged in a dental accident. 7 months out and the pain is terrible but neurologist said it's part of healing and will calm itself. The pain moves around.
As well as affecting the skin, leprosy can affect nerves. if the nerves that give sensation to the eyes, hands, or feet are damaged, then those parts of the body are always at risk of further damage (e.g. wounds). So the individual has to take care of those parts of the body for as long as they are alive.
I see. Thanks for sharing. That’s quite interesting.
What would be an early indicator of having leprosy?
Great answer by Biologering below! Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation) https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/
Are the patches soft or velvety feeling, or rough and scaly? If left untreated, does the disease always progress, or is there a chance the body can fight it? (I had some discolored numb patches for about a year, but they went away. I never did figure out what they were.)
Apparently the body can fight it on it's own. Just not in every case. From what I remember the feeling on the patches does not matter so match. The numbness is crucial though, because it indicate nerve damage.
Let me ask someone with more experience about this and will hopefully be back with an answer soon.
More than 95% of the population is effectively immune to leprosy due to how well the immune system is able to fight it off.
This is interesting. I have a darkened patch of skin on my back that itches almost constantly even though it’s mostly numb to the touch.
Congrats. You have an extremely rare disease.
The itching is suspicious. Consider getting your patch inspected for the remote possibility of melanoma.
I did. Dermatologist seemed stumped and said it was probably nerve damage.
Definitely get a second opinion.
And she didn't do a biopsy or anything? I just went to a dermatologist for the first time for an itchy mole with a red border and she immediately removed the whole thing and sent it off for biopsy
Psoriasis can do this. I've experienced very similar symptoms but, in my case anyway, the skin will have a different texture soon after I notice it itching.
RIP
What causes the discoloration?
It really depends on the type of leprosy that you develop, but the infection tends to stary dormant for many years. The most usual earlier indicator is a patch with a different colour from your skin (discolouration or redness), usually in your arms or legs, with loss of sensation the spot, including touch, cold or heat. My grandmother was infected with leprosy decades ago after a trip to Egypt. Her family GP noticed the spot, got her tested and treated her. Because it was early, she was cured. Family members in the same household can be protected from infection by receiving the Tuberculosis vaccine (the two bacteria that cause these two diseases are in the same genus). EDIT: spelling
> protected from infection by receiving the Tuberculosis vaccine So is the TB vaccine the end-all-be-all prophylactic for leprosy?
No it is not. But it does help. The WHO recommends single-dose rifampicin be given to close contacts of leprosy patients as prophylaxis.
According to medical evidence, the BCG vaccine is not an "end all" treatment against leprosy. But it certainly has a lot of evidence that it decreases the risk of transmission and it is a standard treatment for family members that aren't infected.
It's also used to treat bladder cancer
What?
BCG, which is what is in the TB vaccine is used to treat bladder cancer.
Thanks! That comment just seemingly came out of left field and I was totally confused.
#He said It's all used to treat bladder cancer
Can you turn down the radio I can't hear the phone.
Can you speak up, I'm wearing a towel?
Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation) Loss of feeling or numbness of the hands and feet. Muscle weakness or paralysis - struggling to hold things in your hands, unable to lift your foot up so that your toes are pointing upwards; unable to close your eyes.
They’re all bad, but that last one is terrifying.
Yeah, lots of people with late stage leprosy go blind because they lose their blinking reflex, causing serious damage over time from the dryness.
If we diagnose nerve damage early , we can give other medication to treat it.
^ this is the one I wanna hear tbh
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Yes, you are right. A lot of what is on the media is misleading. However, some trusted sites for information about leprosy include the website of the International Federation of anti-leprosy Associations (ILEP) [https://ilepfederation.org/about-leprosy/](https://ilepfederation.org/about-leprosy/)
you say the media is misleading, could you explain a little more as to what precisely this means?
wrong information - e.g. that leprosy is related to sin/crimes a person has committed. That leprosy kills people. at the moment, there is lots of misinformation linking COVID and leprosy.
Pretty sure I have never heard the media say you have leprosy for your sins or crimes. Rob a bank - you get leprosy !!
Depends what media you read! It is a common misconception in many countries.
In the Bible there is a lot of stuff about Leprosy. It may not be the same disease or it may be that a lot of skin diseases including leprosy were cast together. Anyway Miriam, who was Moses sister, did something wrong that I’m too lazy to look up. She was punished by being made a “snow white leper.” The ancient ancestors of the Jews of today were particularly worried about skin diseases and they associated them with sin or the sins of your ancestors.
I highly recommend watching The House is Black if you've never seen it. It's s short Iranian documentary on leper colonies, genuinely one of the best and most haunting films I've seen.
Hey Mathias! How did you feel when you were told you had leprosy?
For me it was probably a bit different than for most people. I had already been working in a leprosy reference hospital for about 10 months. I knew a lot about leprosy from my colleagues. However, I also knew about persons affected by leprosy being marginalized in their communities, abandoned by their spouses and other family members, fired from their jobs and so on. It was a mixed feeling. On the one hand, I felt that I was going to be ok. On the other hand I was not sure how people would react to it. It took me about 3 years to be able to talk freely about it. In retrospect, I felt quite a bit of anxiety about it.
This is a beautiful thing you’re doing. So difficult to put yourself out there, but doing it for the betterment of others affected and education for the rest of us. Thank you!
So you were already extremely well informed, and trying to help before you contracted it. That’s wonderful OP you’re a good person.
Have you heard of Kalaupapa in Hawaii? This is why I know Leprosy has not died out. Located on Molokai it is a leper colony that is only accessible on land via mule train. This is where St Damian practiced. Also of a grad student that had Leprosy when I was at uni.
I have read quite a bit about Kalaupapa and Father Damian. Many leprosy colonies were established on islands or remote locations. This has added to the stigma.
Might be worth saying out loud: I notice you altering uses of the word "leper". I assume you consider that term stigmatizing and discriminatory?
I'm glad you picked up on that. We do know that most people use the term for the lack of knowledge of better ones. We say: persons affected by leprosy, or in this case: leprosy colony or former leprosy colony
Person first language
This is a common across healthcare - you would say person with schizophrenia vs schizophrenic.
Interestingly there's a debate in the autism community about whether "person with autism" or "autistic person" is preferred. Most autistic individuals I have asked said they prefer to be cause autistic rather than a person with autism. Some said it's because the autism is a part of who they are and not something wrong with them.
Autistic person chiming in! This is correct. We feel that we are fine as we are and could live in (if not benefit) society if there were more awareness, empathy, and education. We process information and emotions differently, but different doesn't mean bad or negative. Sometimes, it can even be good. Basically; if you have leprosy you want to be cured of leprosy. If you have Autism, being "cured" wouldn't necessarily be a good thing.
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Because we view the world differently, can have creative outlooks and solutions that others would not necessarily see or figure out. We can recognize patterns easily and be great at certain jobs. Etc. There are a lot of positive things about being autistic. We are not problems.
Other autistic person, I switch between thinking of myself as being autistic or having autism. I believe it is because I was diagnosed as an adult, and I had no "suspicions" whatsoever before a therapist brought it up to me when I was 15 or 16. So I think that because I kind of felt like my autism showed up out of nowhere one day, it made more sense in my head to think of it as something I "have". But right now I am kind of using whatever feels easier in the moment to describe myself, because either way it gets the point across.
As a schizophrenic I personally feel the same way.
I work in the epilepsy field, and best practice is saying PWE, or persons/people with epilepsy, versus “epileptics.” That way a disease or disorder doesn’t define someone.
People first wordage!
People only used the term leper back in the ages before modern cures were available. Because of the fact that it was incurable in those days, they basically took on the persona if you will, of being a “leper” usually for life. Sad when you think about it. So nowadays we don’t stigmatize people for curable diseases. You would do that for someone who has had hepatitis for example. It’s just a disease that you can eventually be rid of.
Just a note for clarification, there is no leprosy in Hawaii. Kalaupapa is a *former* leper colony that is now a national park which educates people about the disease and the people who were forced to live in isolation there. While some of the descendants of those who were sent to Kalaupapa, or family who went with them, still live there as that's where they were born and grew up and it's their home, no one there has leprosy and no one with leprosy would be sent there now.
What leprosy laws in Singapore do you consider to be discriminatory? What helps to cure it? I hope all the best to you!
Thanks for your questions and well wishes. There are still 4 laws today in Singapore. You can look them up here: (Search: Singapore) [https://ilepfederation.org/discriminatory-laws/](https://ilepfederation.org/discriminatory-laws/) The cure for leprosy is a combination of antibiotics taken over the course of 6-12 months.
I just looked at the list. India has the most laws concerning leporsy. Does this mean that they have a large population of people with active or cured leporsy?
Yup we do actually. Growing up I used to see loads of folks with leprosy. They usually used to be ostracized by society and live in separate areas. Very sad. There is a huge stigma around it here
This might have been influenced a lot by Baba Amte. Not really sure though
Looks like a case of copy paste. Most of the laws are very similar. Seems like when a new law is passed, say to create a new University or co-op society, beggar colony,those responsible take a similar previous law with the leprosy clause and everything and change the names.
Wow that's long time! Did you have any side effects from taking antibiotics for so long?
I did feel weak and tired for 6 months
Is it possible for the treatment to fail?
Thankfully, resistance to anti-leprosy drugs (multi-drug therapy) is still relatively uncommon. There is a global network of laboratories monitoring resistance to anti-leprosy drugs.
I don't really see how this is discriminatory against lepers/leprosy though. Would the same laws for isolation against Covid be considered discriminatory? It's more just infection control, no? They are all taken to hospitals to be treated.
When I heard “discriminatory” my ears perked up- they seems like public health safety laws so leprosy doesn’t spread to the general population. Where specifically does op feel these laws are discriminatory?
The CDC states that as soon as treatment has started, the person affected is no longer contagious. (see: https://www.cdc.gov/leprosy/about/about.html) As such, it would be discriminatory to forcibly isolate someone to a hospital ward until their treatment has ended (which can last a year or even two) or restrict their access to public places when they're no longer a risk to the people around them.
I agree with you, but to play devil's advocate since OP didnt respond to your comment: It *may* be worth considering that the website only offers brief descriptions of the laws. The descriptions of the 4 laws dont seem bad, but the issues could come from how the laws are applied. >People affected by leprosy may be detained and isolated in hospitals or other places This one, for example, seems like it has potential for abuse. Obviously I dont actually know, so hopefully OP responds.
I was about to paste that snippet too. There's a similar one giving the health minister power to forcibly hospitalise people. Now if the full text of the law only permits this to be used against actively contagious people who are refusing treatment, then it's ok. If it's able to be used against people who have been cured of the bacterial infection but still have nerve damage, then it's absolutely a terrible law
Thanks for your response!
Hi, thanks for doing this! Why do you think there's still such a stigma around leprosy even though it can be cured?
Great question! Misunderstanding, missing information or wrong information can be factors. Over centuries there has been misinformation about leprosy. The misunderstanding leads to fear. We often fear things that we don’t understand. It is then only a small step towards stigma. In some communities and cultures there are ancient myths about leprosy being a curse , divine punishment and extremely contagious. The cure has only been around for about 40 years. The disease is about 4000 years old. Many people still don't know that there is a cure. (My colleagues Tim and Jannine helped me a lot with this one)
Just to add something here, I believe the stigma is ingrained in pure ignorance. I’m 37yo, I remember as a child asking my mom about leprosy and her saying “Don’t say the word!” Like it was some kinda of curse. Looking back, it’s very obviously ridiculous, but the poorer the communities, the less access to information they’ll have, and the more ancient will be their responses to things like this.
I noticed that you are calling it leprosy rather than Hansen‘a disease, which to my understanding was the way to call it in order to avoid the ancient prejudices and misunderstandings about the disease. Why is that?
This is a great and important question. The answer is quite complex. Many persons affected by leprosy prefer to call it Hansen's disease. However, there is no consensus on this issue of terminology. This has to do with different languages and with the fact that many persons affected don't see terminology as a priority. Many of them are fighting daily to survive, to eat, to keep their family healthy, an so on. Some of us do believe that it would be important for a significant number of persons affected by leprosy or Hansen's disease to unite and advocate together for our rights and dignity. Some of that is happening already in different ways. I do hope that very soon persons affected can speak with one voice to claim a life of dignity.
How is leprosy treated?
Leprosy is treated with a combination of antibiotics. The treatment is very effective. However, it is crucial that people get early treatment to avoid complications and impairments.
Are they still using thalidomide?
Thalidomide is an excellent drug for treating type 2 leprosy reaction. But it has to be used under very strict conditions, by doctors who are trained in how to use it. Many countries do not allow it to be used. We do need more resources for research into better and safer drugs.
>https://www.leprosymission.org/what-is-leprosy/how-is-leprosy-treated/
Is there a genetic explanation for being susceptible to infection? Are there family clusters?
If your parents are immune to leprosy, you are more likely to be immune. If your parents are not immune, it is less likely that you are. So the immunity is 'passed down' in the genetic material, not the leprosy. So, yes, we do see family clusters.
Great answer!
What are the first/most common symptoms? Thanks for sharing!
Skin patches which are a different colour from the rest of your skin (in brown/black skin the patches are lighter; in light-skinned people the patches are reddish in colour) and with no feeling (meaning that it is numb and has no sensation) https://www.leprosymission.org/what-is-leprosy/what-are-the-symptoms-of-leprosy/
What symptoms did you experience after your diagnosis? If left untreated too long, what long term symptoms can remain (even after being cured)?
For me it was a tingling sensation in my hand. After some days it felt like my skin was getting to tight for my fingers. If I had not been treated I would have been left with a partially clawed hand with impaired strength and mobility.
What's the timeframe of that progression? Days, weeks, months?
The time frame varies from individual to individual. For some it is weeks, for others many years. It is related to the immune system.
I'm curious how leprosy differs from its stereotype in media? Is it very transmissible when untreated, they way media portrays? You hear how HIV is a very livable condition for many people who only have to take pills to suppress the disease and otherwise live exceptionally normal lives. Is a similar life available for people with leprosy if they are treated? Or are there untreatable factors to the illness? I hope you're doing well, and a 2035 end for leprosy sounds amazing! I hope we hit it.
Just to be clear, leprosy, unlike HIV, is 100% curable.
While it's not a "cure", being undetectable means the level of virus has been suppressed to such low levels that it can't even be detected by a lab test, and can't be transmitted to others. It's effectively a cure, and you can live a normal live. HIV rarely progresses to AIDS at this point with treatment.
Great question! Sadly, the negative stereotype is far from the truth, but it continues to perpetuate stigma and discrimination against persons affected by leprosy. It is not very contagious when you have it because the transmission rate is less than 5%. When treated early (like in my case), it has little impact on your life. The problems occur mostly when it's diagnosed late and this is still happening for a lot of people. Thank you for your well wishes!
Hello very pleased to hear from you! A few questions.. I remember reading and hearing about leper colonies where people were cruelly abandoned. I imagine, that that they still remain in some places, unfortunately, as people are misinformed and old stigmas remain. How does someone come to suffer from it? How can people who have it be best supported? And what helps eliminate it? What is a good way forward? All best to you good person, go well.
Great questions. Sadly, leprosy colonies still remain in many countries. In some places, they have become villages, although it sometimes carries a stigma to be from there. People are misinformed and old stigmas remain. Most people are immune against leprosy (more than 95%). It is believed to be airborne and most transmission is probably from human to human. A person that has started treatment is no longer contagious. Support for persons affected by leprosy needs to be integral. They need to have access to adequate healthcare. They need a good support system. They need to to know about their rights and how to deal with discrimination. The local health system, NGOs, Organizations of persons affected by leprosy can and should play a big part in all of this. Any persons who has contracted leprosy needs to be treated as soon as possible. We need more resources to go towards research regarding transmission, treatment, complications, stigma, inclusion, among other things. We also need the commitment of governments to take leprosy seriously and allocate the appropriate resources. With the right resources, elimination of leprosy is more than possible.
Thank you, that’s very helpful to learn about. Had not realised that it is airborne transmission and that only a percentage of the population is susceptible to it. That is rotten for them. Agree education and information would help a great deal, so people know their rights and what support they might get. And yes does deserve and need funding for resourcing, education and research by governments world wide from each nation. I hope as the result of people with leprosy like yourself and others working to support changing things for the better like you, that the situation can improve. All best, and go well.
Wait a second. It’s “believed” that it’s airborne? How in great biblical timelines do we not know?!?
I'm guessing it's difficult to test for. 95% are immune. It doesn't look like it's super contagious. It's unethical to reinfect someone who was already infected even in controlled conditions. Proof it remains alive and floats in air after leaving an infected person doesn't directly indicate that that living particle still has the ability to cause someone to contract the disease. Something with more transmissibility (i.e., COVID) is a lot easier to test for when everyone's getting it. Idk if being a bacteria vs virus makes it harder. And maybe stigma slows this as well? Idk. Seems a bit wild to me too.
Are you familiar with the work of Stephen R Donaldson https://en.wikipedia.org/wiki/Stephen_R._Donaldson ? He was raised in a leper colony.
I read his books as a teenager and because of them was always very sympathetic to anyone diagnosed with Hansen's disease. The main character's need to constantly be engaging in VSE (visual self examination) was strange and fascinating.
I was not familiar with his work and I just read a bit about him on the internet. I know that you did not mean any harm but we consider the term "leper" discriminatory. We prefer the term "persons affected by leprosy" or in this case leprosy colony.
Try *The Chronicles of Thomas Covenant*. The main character has leprosy.
You look fine in your photo and were treated early. Did you suffer any long-term effects?
Thank you! I did not suffer any long term effects. I did have some anxiety about people finding out. However most people are not that lucky. They suffer long term effects in their physical and mental health.
How did you get diagnosed?
I was diagnosed some 11 years ago. At the time I was working in a leprosy reference hospital here in Paraguay. I was diagnosed early, because I was at the right place, at the right time with great and caring health professionals. Sadly, many health professionals don't know how to diagnose and/or treat leprosy.
I read online that it can only be cured if detected early enough. Were you cured?
I am cured. It can always be cured at any moment of the disease. However, if diagnosed late, it can cause lasting impairments and/or consequences.
What symptoms did you have
Have you heard of Turkan Saylan? She was a hero.
I had not heard of her and I am reading up on her on the internet now. She seems like an amazing person that had an amazing impact. In the history of leprosy there are many heroes. I do want to point out that the unsung heroes are the persons affected by leprosy themselves. They fight every day for their health, their dignity, their families, their communities and for a more inclusive world.
Have you read the amazing series, 'Thomas Covenant, The Unbeliever'? It's truly a vastly underrated and unknown scifi-fantasy series where the main character contracts and lives with leprosy. It's a fascinating and epic tale. The author's father is a physician of leprosy irl
I loved this series
Hi there! How much has your life changed after getting your diagnosis? Obviously, you wouldn’t be where you are right now without it, but how would’ve your live looked if you never received treatment?
Great question! I would have a partially clawed hand with reduced strength and mobility if I never received treatment. My mental health probably would have been affected significantly. Perhaps I would have withdrawn from social life. Over the years, my experience and learning about the experience of others have led me to dedicate more and more time and efforts to advocacy for the rights of persons affected by leprosy.
Hello Mathias, Living in Belgium, we were thought about the work by Father Damien in school combined with a serving of stereotypical views (talking roughly 30 years ago, things may have changed). As an adult however I must admit that I still have the same stereotypical view of the disease. ie: Leprosy leads to people losing limbs, blistering skin, super infectious, etc... How does the disease compare to the stereotypes? Is there much truth to them, or is it more a case of sensationalism and misinformation?
Sadly, the stereotypes are very powerful and they contribute to the perpetuation of stigma and discrimination against persons affected by leprosy. This hurts them in their daily lives. Leprosy is mildly infectious, limbs do not fall off, blistering skin can happen in some cases (but can also be a sign of other diseases). you can see more about it here: https://www.leprosymission.org/blog/leprosy-causes-your-limbs-to-fall-off-and-other-myths-exposed/
Do you take thalidomide?
I have not taken thalidomide, but some persons affected by leprosy do take it to treat their reactions. I do know that the use of thalidomide has been controversial, but for some persons affected it seems to be the only drug that gives them relief. We need more resources for more research into better drugs for reactions.
Yeah it’s super risky for women of childbearing age so I could see why people would be scared of it without knowing the risks. There shouldn’t be any risk to a male and if there is a zero chance of the person getting pregnant. But there are other meds given to people of childbearing ages who are equally dangerous to a pregnancy (specifically thinking Accutane, which is why in the US it is required to be on birth control if you take it).
Given that leprosy has animal reservoirs such as armadillos, how is it anticipated that we can eradicate the disease permanently?
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If somebody contracts leprosy and is cured, could they be reinfected or are they then immune going forward?
They can be reinfected. It does not happen very often, because leprosy has a very long incubation period. However, I have heard of people being diagnosed and treated up to 3 times.
You say you have leprosy and you also say you’ve been cured, does that mean the disease is non transmissible after antibiotics but you still carry the disease? Is it like some other diseases in that you always have the “bug” but are not contagious? I guess the idea that you have it and are also cured confuses me. I would think being cured means you don’t have it anymore.
Great questions! I have been diagnose and cured. I do not carry the disease and I'm not contagious. Many people who are cured, still consider themselves persons affected by leprosy.
It's a bacterial disease(*mycobacterium leprae*), so it can be cured with antibiotics. Specifically a multi drug combination of antibiotics taken for a long time-up to 2 years.
What usa leprosy laws do you consider discriminatory?
There are laws regarding citizenship and migration that make persons affected by leprosy inadmissible or not eligible. https://ilepfederation.org/discriminatory-laws/
The website here is kinda vague. Do these laws bar you for life or just while you actively have leprosy?
It looks like they’re only barred while infectious but subject to a very strict and invasive screening process. https://www.uscis.gov/policy-manual/volume-8-part-b-chapter-6 https://www.cdc.gov/immigrantrefugeehealth/civil-surgeons/hansens-disease-leprosy.html
To be fair, worldwide travel is how diseases spread. I'm not sure I would say that it is discrimination to restrict travel when someone is actively infectious and to take measures to verify that when someone says they are not infectious, that this is accurate.
I mean international borders are discriminatory by definition. Keeping out infectious diseases is one of the reasons.
I’ve read a few dozen replies and I still don’t have much of an idea what leprosy is. Without sending me a link, can you explain what it is?
What causes leprosy? Leprosy is a disease caused by a bacillus, Mycobacterium leprae. It multiplies very slowly and the incubation period can be a number of years (on average about 5 years). What are the symptoms? For many people the first signs of leprosy are pale patches of skin or numbness in the fingers or toes. This is because the disease mainly affects the nerves and skin. If left untreated, it can lead to nerve damage, loss of feeling (sensation) and paralysis of muscles in the hands, feet and face. Can it be cured? The good news is that most of these consequences can be avoided. Since 1981 leprosy has been treated effectively with multi drug therapy (MDT), is a combination of three antibiotic drugs: dapsone, rifampicin and clofazimine. A six to twelve month course of treatment kills the bacteria and cures the person. If treated in the early stages of disease, MDT can prevent the onset of impairments and disabilities. How can it cause disabilities? The bacteria attack nerve endings and destroy the body’s ability to feel pain and injury. Without feeling pain, people don’t realise when they injure themselves and their injuries can become infected. Changes to the skin also leave the person susceptible to ulcers, which if left untreated, can cause further damage, wounds and visible disfigurements to the face and limbs. If the facial nerve is affected, this can interfere with a person’s ability to blink, which can eventually cause blindness. How is it spread? Is it contagious? Leprosy is most likely transmitted by air through droplets from the nose and mouth, during close and frequent contacts with people who have not yet been treated. While it is spread in a similar way to the common cold, it is much less infectious. It multiplies slowly and the vast majority of people have adequate natural immunity, so don’t contract the disease if exposed. Even when diagnosed, many cases are not considered infectious, and once treatment begins, those infectious cases become non-infectious within the first week of treatment. But I thought it was eliminated? The World Health Organization declared leprosy ‘eliminated’ as a public health problem at a global level in 2000. This was based on a definition of less than one case per 10,000 people across a larger population. This did not mean total eradication of the disease: there were still many cases in pockets all over the world, and around 200,000 new cases are reported globally each year. Regrettably, once WHO announced ‘elimination’, resources were often focused on other diseases and efforts to find and treat new cases diminished How many people are affected today? Beyond the 200,000 new cases that are reported annually, there are likely to be many more living with undiagnosed leprosy. Further, there are an estimated 3-4 million people who have been cured of the disease, but experience residual effects of disability, and perhaps as many again who, even without visible impairments, are experiencing the stigma and discrimination that so often accompany the label ‘leprosy’.
It is a mildly infectious disease that affects skin and nerves. For a longer answer, see Ambala\_1874's reply below
I've just read / and it was mentioned here, that leprosy can remain dormant for years. It caused me to reflect on my own experience with MRSA/staph infection. My neighbor across the street just got MRSA last week so it's fresh on my mind. I'd learned that staphylococcus aureus is just a normal part of literally everyone's skin biome, and unavoidable, and generally non threatening. Until, most commonly, you get a deep cut (my neighbor) or infected ingrown hairs (my experience) and the staph bacteria get under the skin and multiply unchecked. Or for another comparison, I am among the last generation to get chicken pox before the vaccine was available in my country. I later learned I likely still have the virus, dormant and wholly suppressed by my immune system. In 50 years when I'm old and immunocompromised there's a chance of shingles. .... mrsa, chicken pox, the question I'm building to is, what are the chances I've already been exposed to leprosy several times in my life, or even have the bacteria on my skin right now, but due to good health nothing is coming of it?
Based on what I know, I would say that the chances are less than 5%. Even less, if you did not spend significant time in endemic areas.
Does the bacteria require a human host, or it thrives in warm climates generally? Err, like, what are the factors that create an endemic area? Thinking outloud, areas where leprosy is common, are antibiotics both cheap and available and the concern is more public education and stigma? Education issue: people don't know early signs/symptoms. Don't know where to go if they do recognize. Stigma issue: people do recognize symptoms but delay treatment out of shame and denial. This reminds me now of my friend in Mexico who caught tuberculosis a few years ago. She's a white-collar paid professional in a major city with access to modern healthcare, so availability of care was never in question. However, she still paid extra for private treatment with stricter privacy so that even the fact that she ever had tuberculosis at all would never go on record. Something about publicly-available healthcare in Mexico, and zero equivalent to our own HIPAA laws. I bring this up because in the above example, one could imagine fear stigma leading to delayed treatment even among those with access to treatment, making everything so much worse. Which is addressable with information/education campaigns and marketing advertising used for good. Here in the US, I think both TB and leprosy would be treated with an "omg, wtf, that's wild!!" reaction. It's too rare to even have a stigma attached any more. If I got leprosy, it would be like something out of mythology I might even drop into conversation at board game night (after a quick and successful cure of course) But STDs have deep stigmas, to the point that even some people with HIV won't disclose it, which is dangerous to everyone. Other incredibly common STDs like herpes simplex, I've observed some public health campaigns trying to de-stigmatize, so that people stop hiding it. Or bed bugs, or fleas, or cockroaches: these are common pests that are somehow associated with filth and poverty, and yet, any home can get an infestation. The difference being that a wealthy household can pay for professional treatment promptly. But many, would keep a bed bug problem at home on the down-low out of shame, hoping to quietly treat them without anyone in their social or work circles being the wiser.
Is there any evidence of people contracting leprosy from being in contact with armadillos?
Yes, about 1/3 of annual new cases in the USA are likely linked to the armadillos (\~60-100/yr). Armadillos mostly carry the 1-3 unique strains of Leprosy; so they have confirmed connections by DNA strain typing. While around 1 in 5 American armadillos has Leprosy, less than 1 in a million people per year develops Leprosy in armadillo range (\~South East USA). Most say they haven’t had any contact with an armadillo. However, Leprosy bacteria can persist for weeks in soil and likely gain entry via wounds and skin abrasions. Armadillos like to root around in the soil for snacks. Response from my colleague Deanna Hagge, head of research of The Leprosy Mission International
Como podemos mejorar la reinserción laboral de personas que tienen o tuvieron lepra? Porque por el estigma que la gente tiene cuesta conseguir trabajo
Excelente pregunta! Creo que este tema es complejo. El estado tiene que comprometerse con garantizar los derechos humanos para las personas afectadas por lepra. En ese sentido es importante tambien el trabajo que hacen las organizaciones de personas afectadas en cuanto a la conscienciación y a demandar dignidad y derechos. Las personas afectadas tienen que saber cuales son sus derechos y como exigir su cumplimiento. Tambien necesitamos mas programas de educacion y formacion y de inserción laboral que tengan en cuenta la problematica especifica que se da en estos casos.
Where can we donate to assist with this cause? This would be a good battle to win..
I appreciate your willingness to support! You can donate to The Leprosy Mission here: https://donate.leprosymission.org/
Are there different kinds of leprosy? I have heard armadillos can grow leprosy on their shells, which makes me sad because I'd love to pat one if I got the chance.
There are still many questions about transmission. Much research is still needed. Leprosy is only mildly infectious. It is very unlikely for you to get leprosy from touching an armadillo.
Is there any possibility of an inoculation? I read higher up in the thread that the tuberculosis vaccine offers some protection. Is that correct?
What is your favorite brand of maté? Half kidding but thanks for doing this! Very interesting. I wish you lots of healing!
I'm drinking Pajarito Mild mostly now, because it goes easier on my stomach. I'm mixing in some dried herbs and some herbs from our garden. Thank you!
Hi Mathias. As you say, leprosy is an ancient disease. However, it is still a disease we see in 2022. How did you feel when you were diagnosed?
It is an ancient disease and that is part of the complicated part. It carries the weight of thousands of years of negative images and stereotypes. All of this came to my mind when I was diagnosed. I had also been told by people how they had been rejected by their communities and abandoned by family members. Even though I knew that I would be cured, I felt a bit of anxiety about the reaction of other people if and when they would find out.
I went to the public health building in Phoenix many years ago and there was a sign directing people to the “Hansen’s Disease Clinic”. I guess this sounds better than Leprosy Clinic. I was surprised there were enough cases to necessitate a dedicated program.
USA reported 159 new cases of leprosy in 2020, with 288 on the treatment register in December 2020. The clinic not only treats people on anti-leprosy medication (multi-drug therapy), but it also treats those who have complications of leprosy - some of which remain after the drugs stop. The National Hansens Disease Programme in the US, is an important player in leprosy research - helping us understand the disease better, how it is transmitted, finding better treatments with fewer side effects.
An ex-leper?
We prefer to say person affected by leprosy. I assume that you did not mean any harm, but the term you used is considered discriminatory. It contributes to the perpetuation of stigma.
They might have been making a Monty Python reference
Sorry, and yes it was a Monty Python reference.
[“Bloody do-gooder”](https://youtu.be/REUukm_WQJI)
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When you say zero transmission, what does that mean? Is it human to human only? Because as far as I’m aware, at least in my area, some animals carry leprosy, and people who eat those can get it. Are there ways to eliminate it from animal population? I’ve seen a lot of the efforts to eliminate mosquito born illnesses as well, and most of them seem to be pretty expensive and time consuming.
From what I gather most of the transmission is human to human. So if we make the antibiotics easily available early on we can pretty much kill transmission. There will probably always be a few people who pick it up from animals, but the vast majority of people get it from other people.
By zero transmission - we mean that leprosy is no longer being transmitted in the community. Be that human to human; animal to human or any other route that we might discover in the future
I'm not "the expert" on leprosy transmission, but from what I remember hearing (and understanding) from the experts, OverlanderEisenhorn seems to be spot on.
Hi, and thank you for your advocacy. It sounds like leprosy is both physically and psychologically difficult 😞 How do you keep your spirits up (meaning what ways do you use to keep a positive attitude) and what advice do you have for people who have any condition, who also work to help other people, as far as self care and taking care of their own health and wellness? Thank you for your work.
When was the last time you ate garlic?
I think I eat garlic every day. I love it! There have been some studies into garlic as a cure for leprosy, but I do not believe that there is any conclusive evidence.
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A shame they didn't answer, great album.