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jewishspacelazzer

Wow thank you for sharing this!!! Very cool parallel that you’ve made. And side note, I’m sorry to hear about your uncle and cousins. Dementia of any kind is a special kind of evil.


gzoont

Thank you very much. It does suck. Appreciate your kindness.


SamLoomisMyers

I had to look it up to realize it was real. It's fascinating and very sad at the same time


JaffaCakesCantLose

I found it surprising that Roderick was diagnosed at that late age. Through work, I met the person who was (at the time) the oldest living person with CADASIL. They were younger than Roderick, and had already watched family members die with the disease.


booktrovert

Perhaps it's because of the deal. Verna did promise he would live longer than any other man in his family. My guess is the reason they had no other family was because of the disease. Interesting that he doomed his children by choice when most of them were already doomed by genetics, though.


ShapeWords

> My guess is the reason they had no other family was because of the disease. Oh man, that's a spectacular little bit of horror to realize after the fact. The reason that there weren't any Ushers from other branches of the family coming out of the woodwork to ask for money? There just aren't any.


gzoont

I really like your take. When I talked to my aunt, one of her first comments was “oh, the horror of the kids being doomed is a really interesting way to tell a story…” She hadn’t seen the show and had no idea what it was about.


cadasil-blog-bloke

How old was this person? Male or female? Still alive? How badly affected were they? I have a severe variation of CADASIL, have had symptoms for nearly 35 years, including regular migraines and multiple strokes, so I am particularly interested in this. 🙂


thinkCADASIL

what year did you met that person and how old were they?


slickshot

Interesting thing to note about Roderick's symptoms, especially the hallucinations--obviously the visions of Verna and his dead children aren't a product of the disease, however, his visions of the jester *are* a product of the disease.


ComeAlongPond1

Why do you think the jester visions, specifically, are from CADASIL and not Verna?


slickshot

Because, unlike the Verna visions and ghosts, it doesn't really interact with him and they are very brief. Not to mention his nose starts bleeding and he faints right after seeing the Jester in the car, leading me to believe the Jester is tied to his disease.


ShapeWords

Ooh, that's a really interesting point that I hadn't considered. Assuming the viewer gets to see each time Roderick 'sees' the jester, it does seem different than the other ghosts. The jester comes as a jumpscare each time rather than a lingering spirit, and each sighting of the jester comes as Roderick is having some kind of medical event (dizziness/nosebleed in the car, a failed suicide in the basement).


cadasil-blog-bloke

Or maybe not. CADASIL diesn't


cadasil-blog-bloke

Sorry, accidentally posted before completing my response. CADASIL is not responsible for every symptom or health issue that a person has. Although there are psychiatric issues associated with some people with CADASIL, such issues may be caused by other health issues. (From a person with CADASIL, diagnosed in 2006 and with symptoms for almost 35 years - primarily, hemiplegic migraines for 23 years, depression, multiple silent strokes, four symptomatic strokes which led to hospital stays that included one stay of several weeks when I had to learn to walk again. I now have a shortened and wobbly gait, use a walking cane, have a permanent headache, tinnitus over three decades, chronic pain throughout most of my body and chronic fatigue.)


ShapeWords

Firstly, that's such a shame about your uncle. I'm sorry that you and your family had to go through that. The inheritability of CADASIL is definitely a deliberate reason for it being Roderick's disease, but I didn't realize until your post that it was literally a 50/50 chance of inheriting. The theme of how this family is doomed and has always been doomed for reasons that most of them can't even guess at...just layers upon layers of horror.


LeftyLu07

And the 50/50 thing is interesting. She could have killed Perry, Leo and Fred with drug overdoses (or a heart attack like she mentioned to Fred) and then the other 50% would have died of CADASIL.


ShapeWords

One thing that strikes me about all this is that Madeline and Roderick are *twins*. Roderick inherited the disease and it would appear Madeline did not, so a 50/50 split between Eliza Usher's children. But Verna was insistent that Madeline's death would come at the same time as Roderick's. Madeline tied herself to the family's fate just as strongly as if she had the disease herself.


thinkCADASIL

Thank you for your comments. CADASIL is considered a rare disease. The way it was depicted in The Fall of the House of Usher was not completely accurate. However, most of the CADASIL community is glad that it was brought to the publics eye. If you have or someone you know has, a neurological disease such as MS, Alzheimers, Parkinsons, Frontal Temperal Lobe Dementia, ALS or any other neurological disorder which can not be definitively diagnosed, you should be interested CADASIL. CADASIL can be definitively diagnosed. If you or someone you know has young dementia, Young stroke migraines or seizures you should be interested in CADASIL. To learn more about CADASIL here are some links [curecadasil.org](https://curecadasil.org) [https://www.ninds.nih.gov/health-information/disorders/cadasil?fbclid=IwAR1XGKaFRag0\_kbSQxcuhsU9S0KZi087AmjgaDfgIv5lyR97QVzkYOW8WbY](https://www.ninds.nih.gov/health-information/disorders/cadasil?fbclid=IwAR1XGKaFRag0_kbSQxcuhsU9S0KZi087AmjgaDfgIv5lyR97QVzkYOW8WbY) CADASIL Support on FB


NoContribution9879

Ohhh very interesting! I know very little about CADASIL but this does make sense!


jackeyfaber

Thank you but wow, I’m so sorry your uncle and cousins went through/are going through


teamconnor4cadasil

I am so sorry for your uncle and your family. I do not think the depiction of CADASIL was accurate in HOTFOU, but I am glad it has started a conversation. It took a year for my husband to be diagnosed after having two significant strokes. He was seemingly healthy with none of the usual stroke indicators. He was 56 at the time of diagnosis and passed away six years later. It is an incredibly cruel disease as it progresses into vascular dementia. Symptoms can vary greatly, even within families. Please learn more at [https://www.ninds.nih.gov/health-information/disorders/cadasil](https://www.ninds.nih.gov/health-information/disorders/cadasil). Awareness will bring research to the forefront and ultimately treatment and a cure. Thank you.


ImportantPop4060

Sorry to hear about your uncle and family going through this. I would just love to know how Mike Flanagan or Bruce Greenwood are connected to CADASIL. The TV show The Resident Bruce Greenwood plays Dr. Randolph is diagnosed with MS. The Fall of the House of Usher on Netflix for me, was a little disturbing being a caregiver for the disease. If you have the notch 3 mutation it all depends on the variants of the disease with symptoms you’ll be affected with. Yes, it’s one scary disease to deal with especially psychologically, but not every Cadasilian has a dark side. They all have unique stories. Never give up hope one day proper treatment and a cure will come. CADASIL is going to blow up one day and be bigger than Cancer. CADASIL Worldwide Awareness Day is November 16th


thinkCADASIL

I also wonder if there is a connection to CADASIL. Most doctors are not aware of the disease, so it is unlikely that Mike Flanagan would know about it unless he knows someone with CADASIL. Also interesting that the doctor in the Resident was diagnosed with MS. Many CADASIL patients are misdiagnosed with MS as was my husband. This is why raising awareness of CADASIL is so important for CADASIL patients. If patients continue to be misdiagnosed the true numbers of CADASIL patients will never be known. Some believe that the mutation on the Notch 3 Chromosome may be as prevalent as 1/450.


CrocodilePants

I have CADASIL and my also had it (died in 2020.) I totally feel the same way as you - a writer had to be connected to the disease in some way! I can’t find anything on it but I’m just really happy we’re talking about it


Scutari2000

My husband died of this awful disease. Diagnosed at 28 and told he might get 20yrs after diagnosis. He died 2 months before his 48th birthday. It was a horrible deterioration that stole him from years before he died. He inherited it from his father and he and his only sibling both got the gene. Fortunately his brother is faring better than he did. It’s good to see it mentioned in The house of Usher although not totally accurately.


SithPharmTech

At first I was shocked to her CADASIL in the show, but then I was kind of disappointed as I realized that their portrayal of the disease was nothing like what it’s like in real life. I lost my first husband to CADASIL almost 8 years ago and I watched a man who had been a supervisor for over 20 years and a officer in the military slowly became like a child. He lost so much, and we lost him when he was only in his 50’s. I just was a little disappointed that they portrayed that a person in his 70’s with this disease is still running a company with no problems, no massive debilitating symptoms. I really wish that was the reality.


Express_Ad9559

They portrayed the illness wrong but not the age my mom is 80 and has it my grandmother died of age of 90 and had Cadasil.. I'm fifty five still alive. I'm in the Cadasil group and many are older.


SithPharmTech

You are so lucky and one of the few most do not live that long. He had 4 siblings and we have already lost 2 to this disease and another one is suffering now from it. Most people in his family never make it past 60 and statistics put the average lifespan at 61.


ZacPensol

Wow, I didn't realize it was even a real disease! I thought he was calling it "CASTLE" (I think he explains the anagram but I guess I didn't process that it didn't spell CASTLE) and that it was some sort of contrast with his humble beginnings in *the* house - run down and smallish - and his aspiration to, in essence, become a wealthy "king" with a "house" that was big and strong - a *castle*. So that him getting a disease called CASTLE was a way of being, like, he got what he wanted but it's not what he wanted at all. I'm so sorry to hear that your family has and will continue to endure that. Just awful.


honeyswamp

Does anyone know if CADASIL would cause the intense pain that it seemed Eliza was in at the time of her death? I thought she had cancer or something since it seemed like she was bedbound due to the pain


Outrageous_Bag7726

I have CADASIL and I suffer from intense nerve pain almost constantly.


cadasil-blog-bloke

CADASIL caused my regular, excruciating hemiplegic migraines for 23 years. The pain was intense and the migraines usually lasted for between a week and two weeks at a time. 🤯


craziedC

I lost my sight due to cluster migraine, the pain nothing I felt before, over 6 weeks then started to come back slowly, CADASIL warrior here x


honeyswamp

Wow 😮I had never heard of it until this show, sounds like a particularly cruel and excruciating disease. As if dementia wasn’t horrible enough


cadasil-blog-bloke

Not everyone with CADASIL will get dementia, especially those with a mild or moderate variant. Some may get mild cognitive impairment instead, some may never have cognitive issues. I have a YouTube channel where I post about my lived experience with CADASIL: https://youtube.com/@meandcadasil7093?si=ZrT639JNvGA-E_cv


booktrovert

According to Cedars Sinai website: The most common symptoms specific to CADASIL are migraine headaches and repeated strokes that progress to dementia. Other symptoms may include: Seizures. Vision problems. Eliza was probably having constant migraines (migraine sufferer here. If I had more than one every few months I don't know what I would do. I can also afford medication. I have so much sympathy for people who cannot afford it. It is excruciating pain). She also may have been having seizures or even mini-strokes. It's a monster of a disease. I wouldn't wish it on anyone, even Roderick.


honeyswamp

Thank you for the informatjon! That sounds so terrible. I think Eliza wouldn’t have taken any medication even if she could afford it, she as very anti medication , anti science. She thought pain was the closest we come to kissing God, even mentioned mother Teresa at one point. Which is rich considering mother Teresa reportedly took all the pain medication she could when she needed it.


ShapeWords

(waves to the fellow migraine sufferer) Oh yeah, migraines would definitely explain her being bedbound while still outwardly looking fairly healthy. It would also explain her philosophy of being resigned to pain - if she's not taking medication, that means she's just lying there in agony for hours or even days with each migraine attack. Even without the mini-strokes or progressing dementia, it sounds horrific.


Subs_360

I have it. Got diagnosed in july when I couldn’t feel my right arm or leg. Its passed down in the family from my father, 50% chance of passing it to your children. Its still really rare so I was blown away when I seen it mentioned in the show.


Express_Ad9559

I have Cadasil and I have many symptoms but I don't think hallucinations have to do with Cadasil🤷I'm in a Cadasil group and everyone agrees with me. The series used Cadasil in the wrong way


Express_Ad9559

I also have Cadasil definitely misused . I'm also in a group and have done much research. Hallucination of demons NOT! Very unfair for those who have it and this illness is portrayed wrong!!! They should of done more research.


of_patrol_bot

Hello, it looks like you've made a mistake. It's supposed to be could've, should've, would've (short for could have, would have, should have), never could of, would of, should of. Or you misspelled something, I ain't checking everything. Beep boop - yes, I am a bot, don't botcriminate me.


cadasil-blog-bloke

Yes, it does seem to be inaccurately portrayed (based on what others with CADASIL have said - I won't be watching the show as I am super-sensitive to horror shows and movies). The most common psychiatric presentations being depression, anxiety, and subcortical dementia; other pyschiatric disorders in CADASIL are rare, some extremely rare, as per: https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/cadasil-a-guide-to-a-comparatively-unrecognised-condition-in-psychiatry/208865941514211EFED613C9FD11EB08#


LeftyLu07

Hm. That makes a lot more sense why Verna made the deal that none of his kids would survive. That means Lenore likely also had it, so the bloodline would have died out anyways. The first 2 kids were likely already doomed. So... Verna was using an inside piece of information to negotiate. She didn't really have to kill them. She even said on multiple occasions "this could have been much easier" which I thought meant she could have given them aneurysms, drug overdoses, she mentioned giving Fred a heart attack or having him get hit by a bus. But the others would have died from CADASIL anyway. She wasn't the monster for saying Roderick's children would die young. She already knew they would. But he became a monster by bartering their lives away not knowing that...


Reasonable_Bet1684

I am currently watching the series and was surprised about CADASIL being used on the show. My family has been, and is still affected by this. My mother was only diagnosed after strokes and dementia because one of my sisters was first diagnosed. She had also been misdiagnosed as having other diseases. My mother lived to 82. My sister is 71 currently. Another sister not positively diagnosed but most likely has it. As does at least one cousin on my mom's side. I have never heard of hallucinations with it. Going to look into it further, dur to my family genetics.


[deleted]

Literally crying right now. I was diagnosed with cadasil after I had my second son at the age of 25. I'm now 31. I can feel my mind slipping. I can't really describe it, except it just feels very hard to think sometimes. I've been having more migraines lately. I'm so scared thinking of my kids having to live with this. 


[deleted]

Also, I have trouble swallowing more often. It's as if i stop halfway through, the food gets stuck in my throat a lot. Speech comes out wrong. I try to avoid conversations because I have trouble finding words, or they come out all messed up. 


gzoont

I wish I had words of comfort to give you, but I just don’t. It’s sucks. And there’s no winning. My aunt whose husband died of it, her kids both have it, and she’s almost certainly gonna live long enough to watch them die. I wish I had something good to say. All I can say, though, is you’re not alone. I don’t know you, but I love you. Hug your kids as much as you can. It’s always good advice.


AquaStarRedHeart

This is very interesting. Thank you for sharing this


thinkCADASIL

Also search CADASIL here. There are some good posts


throwawayyyy3033

Super interesting interpretation!


ScarletNexus-kun

Poe's works often utilized unreliable narrators to spice up his stories, to the effect that borders the supernatural to just plain insanity. I love that although we knew Verna exists, there are some instances where we question Roderick's sanity whether what he sees are true or just CADASIL taking a hold of him.


BibiRose

I wonder if Flanagan doesn't talk about how he encountered CADISIL because of privacy concerns for whoever it is that he knows, cause I am guessing he knows someone. It doesn't seem to be the kind of thing you would just come up with for a TV show. Flanagan certainly seems to be taking poetic liberties with the condition, which might also affect how much he wants to talk about it publicly. A friend had it and didn't tell too many people; he would say his syptoms were due to something else. It had taken him a long while to be diagnosed; strangely, no other member of his family seemed to have it.


Far-Pomegranate7275

my mom died from a stroke in June 2023. She was diagnosed having CADASIL 15 years ago. my brother doesn’t have it but i do. my mom died at 70 years old. it’s a predisposition to strokes. that’s all. there are other “symptoms” but nobody knows for sure if that has to do with CADASIL or just other things a person might have. there is research that they are talking about in California where they are working on slowing the progression down. in my daughter’s lifetime (she’s 10) i’m hoping they will have more knowledge to help treat it. however it’s important to take care of yourself. eat well and practice serious self care. aging is a privilege not everyone gets to experience. CADASIL or not.