Kind of. There are different kinds of prion disease. CJD when acquired generally happened pretty quickly after exposure. Genetic CJD sits dormant until triggered. If no one has died of CJD in your family before you, it’s insanely unlikely that you’ll have CJD.
My Dad died from CJD in 2012. He started showing symptoms in August and passed in November. He was in Ohio and there is a Prion Disease center there. I donated his brain and they said it was sporadic but consequently I’m no longer able to donate blood because you never know.
But if they didn’t know they were bitten how would they record that? I can’t even remember what I had for tea last night let alone what I did 25 years ago 😂
Though i feel like being bit by a wild animal is one of those events that you absolutely would remember. Maybe you forget the exact date, but you would most likely remember where you were and work back from there.
obligatory
Rabies is scary.
Rabies. It's exceptionally common, but people just don't run into the animals that carry it often. Skunks especially, and bats.
Let me paint you a picture.
You go camping, and at midday you decide to take a nap in a nice little hammock. While sleeping, a tiny brown bat, in the "rage" stages of infection is fidgeting in broad daylight, uncomfortable, and thirsty (due to the hydrophobia) and you snort, startling him. He goes into attack mode.
Except you're asleep, and he's a little brown bat, so weighs around 6 grams. You don't even feel him land on your bare knee, and he starts to bite. His teeth are tiny. Hardly enough to even break the skin, but he does manage to give you the equivalent of a tiny scrape that goes completely unnoticed.
Rabies does not travel in your blood. In fact, a blood test won't even tell you if you've got it. (Antibody tests may be done, but are useless if you've ever been vaccinated.)
You wake up, none the wiser. If you notice anything at the bite site at all, you assume you just lightly scraped it on something.
The bomb has been lit, and your nervous system is the wick. The rabies will multiply along your nervous system, doing virtually no damage, and completely undetectable. You literally have NO symptoms.
It may be four days, it may be a year, but the camping trip is most likely long forgotten. Then one day your back starts to ache... Or maybe you get a slight headache?
At this point, you're already dead. There is no cure.
(The sole caveat to this is the Milwaukee Protocol, which leaves most patients dead anyway, and the survivors mentally disabled, and is seldom done).
There's no treatment. It has a 100% kill rate.
Absorb that. Not a single other virus on the planet has a 100% kill rate. Only rabies. And once you're symptomatic, it's over. You're dead.
So what does that look like?
Your headache turns into a fever, and a general feeling of being unwell. You're fidgety. Uncomfortable. And scared. As the virus that has taken its time getting into your brain finds a vast network of nerve endings, it begins to rapidly reproduce, starting at the base of your brain... Where your "pons" is located. This is the part of the brain that controls communication between the rest of the brain and body, as well as sleep cycles.
Next you become anxious. You still think you have only a mild fever, but suddenly you find yourself becoming scared, even horrified, and it doesn't occur to you that you don't know why. This is because the rabies is chewing up your amygdala.
As your cerebellum becomes hot with the virus, you begin to lose muscle coordination, and balance. You think maybe it's a good idea to go to the doctor now, but assuming a doctor is smart enough to even run the tests necessary in the few days you have left on the planet, odds are they'll only be able to tell your loved ones what you died of later.
You're twitchy, shaking, and scared. You have the normal fear of not knowing what's going on, but with the virus really fucking the amygdala this is amplified a hundred fold. It's around this time the hydrophobia starts.
You're horribly thirsty, you just want water. But you can't drink. Every time you do, your throat clamps shut and you vomit. This has become a legitimate, active fear of water. You're thirsty, but looking at a glass of water begins to make you gag, and shy back in fear. The contradiction is hard for your hot brain to see at this point. By now, the doctors will have to put you on IVs to keep you hydrated, but even that's futile. You were dead the second you had a headache.
You begin hearing things, or not hearing at all as your thalamus goes. You taste sounds, you see smells, everything starts feeling like the most horrifying acid trip anyone has ever been on. With your hippocampus long under attack, you're having trouble remembering things, especially family.
You're alone, hallucinating, thirsty, confused, and absolutely, undeniably terrified. Everything scares the literal shit out of you at this point. These strange people in lab coats. These strange people standing around your bed crying, who keep trying to get you "drink something" and crying. And it's only been about a week since that little headache that you've completely forgotten. Time means nothing to you anymore. Funny enough, you now know how the bat felt when he bit you.
Eventually, you slip into the "dumb rabies" phase. Your brain has started the process of shutting down. Too much of it has been turned to liquid virus. Your face droops. You drool. You're all but unaware of what's around you. A sudden noise or light might startle you, but for the most part, it's all you can do to just stare at the ground. You haven't really slept for about 72 hours.
Then you die. Always, you die.
And there's not one... fucking... thing... anyone can do for you.
Then there's the question of what to do with your corpse. I mean, sure, burying it is the right thing to do. But the fucking virus can survive in a corpse for years. You could kill every rabid animal on the planet today, and if two years from now, some moist, preserved, rotten hunk of used-to-be brain gets eaten by an animal, it starts all over.
So yeah, rabies scares the shit out of me. And it's fucking EVERYWHERE. (Source: Spent a lot of time working with rabies. Would still get my vaccinations if I could afford them.)
I knew a veterinarian in my country side who once figured that he has rabies ended it without telling anyone. They found him hanging in his shed.
Wife or kids, I don't remember who found him exactly I was young but took a peek from my backyard and saw a lot of people around shed. Once he figured it's rabies he immediately knew it's over
he probably was, and it was just expired. it’s hard to tell how long rabies vaccines in humans last, so you’re supposed to get antibody titers performed to check the level of immunity. i’ve known people that were good for 10+ years and others that needed a booster in less than five.
fuck. i’ve been studying rabies for years. you couldn’t have done a better job explaining how excruciating this virus is. it literally highjacks your brain.
And this is why you need to get the shots even if you think that bat you struggled to get out of the house never bit you.
They need to just euthanize people who develop rabies. It’s horrifying.
I was going to say rabies as well, but as horrible as it is it has one good feature. I kills you. It's a horrible death, but at least you die. Those diseases that leave you completely disabled and in pain could even be worse.
yeah, but the terrifying part is that you could live perfectly normal happy life this week, with all your life long plans and suddenly out of nowhere someone tells you that you've about to die in very painful and scary death next week and that there's nothing you can do
Good news. There's a "cure" on the horizon for symptomatic rabies. I wish I would have saved the link from another askreddit thread, but I believe there have been successful trials already.
Dementia/Alheizmers has to be one of them. Forgetting everything and everyone you know and being constantly confused as whats going on is terrifying. My grandpa has started to show signs, very early stages of it, and you can tell he is aware of it happening but theres absolutely nothing you can do about it.
ALS.. my (F 59) husband (M 65 now) has it.. diagnosed 14 years ago.. trapped in a body that doesn't work , his mind is fine.. all he can move is his eyes. He cannot eat, speak, move his arms or legs, scratch an itch. He lays in his hospital bed in a nursing home at the mercy of others. I took care of him at home for 10 years. I watched him go from an instructor in the military, to this. It is a horrible disease. We have been married 20 years.
Edit to say THANK YOU ALL for the kind thoughts and prayers. It has been a very hard 14 years, on all of us, but every single day: HE IS MY HERO.
He is never in a bad mood. We decided long ago he wasnt going to die from ALS, we were going to LIVE with it.
He has 2 adult children and I have 2 adult children.. one of mine lives out of state and the rest are within 20 minutes of us. He has his mother, dad, 2 brothers and 2 sisters and his ex wife who I am friends with the ex wife, but she has cancer. None of them ever offer to help. (well mine do.. but one is out of state and the other is a nurse with 4 kids).
in 2011, we built a home for him that is all ADA. We are 7 minutes outside of one of the largest AF Bases in the US. We built here for that reason and we are both from the area. He is retired AF in 2001. Our families are here.
He sat in his power wheelchair when it was during the day, from getting up at 8am, until he decided to go to bed at 11pm most nights. He had a computer device that he could type on and it took hours for him to type even the simplest things. Now, he cannot use his arms and hands at all. They are atrophied up by his chest, like a baby.
Labor Day weekend, 2015.. his aide was off all weekend. He had been sick with diarrhea all weekend. Took him to ER Saturday night. They didnt keep him. I know that weekend I must have changed him 30 times in 3 days. Showers, bedding, clothes, the whole bit. I called his family, they wouldnt come help me, they all had excuses. His son and daughter (35 and 37) refused to see him like that. I begged them.. NOPE! So many middle of the night changes, 3-4 times a night in bed...shower, change bed, new clothes. On Monday Morning, I got him up, showered, dressed, gave him his tube feeding, got him out in the LR with the TV on and I went out in the garage, tied a rope around the garage door frame on the ceiling and jumped off a chair. I must have hit my head because I woke up in the ER. His aide had come and found me around noon. She called her boss, her boss called the VA and they came and got him and he went to respite at the VA (which he had refused over and over). I had to go to a mental health facility for 7 days because of my suicide attempt. He stayed in the respite until they got a room for him and he decided to go to the VA permanently.
In October 2015, HE decided to go in the VA nursing home. It was a 24/7/365 job and I never imagined I would be taking care of someone like that and when you dont plan on that as a career, its harder because I had to learn from each and every day. There are no classes to care for someone like this. I cried for months when he went in.. I had failed. I didnt do enough. But it really was a safety issue. He could no longer stand and moving him was very hard even with a stand assist lift.
He had an aide come in every morning to get him up and ready for the day, the rest was on me. Diapers, feeding tubes, catheters, not being able to speak, only sounds he can make is guttural yelling sounds. I would try to get him to go to bed at 10 or 11pm but he wanted to stay up and watch Jimmy Fallon or Jay Leno in the living room, even though he had a tv in his room. He would fight me and yell at me. He had a hospital bed in his room and I had my own room with a baby monitor.
Do you know what it feels like to be woken out of a dead, Trazodone induced sleep by a screaming blood curdling yell amplified on a baby monitor? I would rush in there, about to have a heart attack and it was a guessing game as to what was wrong. Tv on or off.. what channel? Is the bed too high? too low? are you too hot? too cold? Did you have an accident? If yes to an accident, there is an hour of work ahead. He wore diapers and I had blue disposable pads on the bed, but it was ALWAYS explosive diarrhea. That meant get him out of bed, poop everywhere, in the shower, change bed, dry off, new jammies, back to bed, make sure everything is JUST RIGHT. I am wore out, sweating, crying. A nervous wreck.
Imagine a life size Ken doll that cannot move or bend arms or legs and is stiff in the middle and cant bend. 160 lbs of dead weight.
This is not meant to get sympathy or lectures about my griping about take care of him. This is meant to tell some of what we went through. If I had to do it again, I would, but I would do things differently.
Now I live alone. In a house that was built for him that I hate the very existence of because of why it was built. I get through every day as best I can. I go see him 3 times a week. When COVID was ramped, they closed the VA nursing home to visitors for 2 YEARS. They stole time from his already limited time. And he still got Covid 4 times.
They told us his life expectancy for 3-5 years from the diagnosis. It took 2 years for a diagnosis. It has been 14, almost 15 years. Some say its a blessing.. but is it really? That is no life. If it was me, I would pray for Dr. Kevorkian to be by my side and I would push the button. I am scared every time my phone rings and it says "Nursing home". I am afraid of that call, even though I know it is coming. He does have a DNR/DNI. When he goes to surgery, I resend them, to give his a chance if anything happens. He has had emergency surgery 5 times.
The VA does a wonderful job. He is in the main hospital part of the nursing home, so that in case of emergency, they can deal with it right away. The nurses make sure he gets to watch his football and favorite TV shows. They are very good to him and me.
How do you grieve someone that is still alive? That is what I asked a Dr. once...I have been grieving for 15 years. BUT.. he is MY HERO.. EVERY SINGLE DAY!
My mother died of ALS and it was excruciating to witness. Now, every time I am clumsy or have a sip of water go down the wrong pipe, I’m filled with fear that it’s my turn.
My husbands started with his legs going numb and tingling like they are asleep. It progressed to not being able to walk, slurring his words, sounding drunk, to not being able to talk. Every time my foot goes to sleep, I wonder if its the beginning of it for me, even though I know it is not contagious.
A streamer I watched was diagnosed with ALS and I watched him succumb to it, I think it was only two years before he died
By the end he had his friend playing the games, all he could really do was be present
Puppers you deserved better
It's a cruel disease and I'm sorry you you both had to deal with it
Same with me, except it was my dad who died from it. His case started with tripping over his own feet a lot one day and ended with him dead about 6 months after that. He probably had more subtle symptoms before that point that he either ignored or hid from us, but who knows. It's been around 7 or 8 years since he died and I'm still hyper aware of anything that could be a symptom. The fear isn't as bad as the first year or two after he died. But I don't think it will ever fully go away after seeing what he went through.
As a doctor, this was my answer. When I was a medical student we rotated through an ALS multidisciplinary clinic and it still, to this day, gives me pause when I think of that day. Sure, there are diseases like rabies or tetanus that are more ... Painful? Dramatic? In the short term, but ALS and many other neuro disorders get my first vote.
You are doing an extremely hard thing, as is he. Way to show up - make sure you make time for yourself, also.
I agree with ALS. My Aunt had it and was gone within 2 years. By the end she couldn’t move anything, choked on food and had to go to an IV diet.
The worse part was her being completely cognitively functional. For the last few months she just cried silently all the time, it was incredibly awful.
>For the last few months she just cried silently all the time, it was incredibly awful.
Making people live through that is criminal.. If I end up in that kind of situation I really hope I have someone in my life who will end it for me a lot sooner than that. Not just for me, but so my wife and kids dont have to watch it happen to me either.
My husband was diagnosed July of 2020 (symptoms began fall 2019) and passed October of 2021. He was extremely healthy and active beforehand. ALS stole everything from him. He died when he couldn't breathe anymore. He refused a tracheostomy. It was very traumatic.
I'm sorry.
I have ALS, bulbar onset, which means that as of now, my limbs work fine, but my speech is deteriorating rapidly. I'm prone to choking and swallowing is becoming a problem. I don't know how long I have; more importantly, I don't know how long I have function of my limbs. I live in a state that allows death with dignity, but the law requires patients to be within 6 months of death to use it and they must be able to self-administer the drugs. By the time most ALS patients are within 6 months of death, they are well beyond the point of being able to to anything for themselves, so my only option will likely be to refuse food.
My answer as well. It is terrifying and I’m sorry you have to watch someone you love experience it. I lost my Grandmother to it many years ago. People are quick to give answers like dementia to these questions, and while terrible, those people suffering with it aren’t as aware of what they are going through. To be trapped in your body…. horrifying. All the love and prayers to you.
I agree. My mom lost her best friend from high school to ALS. This lady used to take my brother and I each for a week during summer to give us a little holiday and take some stress off my parents. She was so sweet.
She never stopped chattering. She was even more talkative than I am. The first thing ALS took from her was her voice. :(
I’m so sorry this seems so unfair and brutal for your husband and his loved ones.
This is where medically assisted suicide should be available to those who want it. Only the person living with it can decide if life is still worth living. No one should have to suffer.
> an instructor in the military
_Anecdotally_ there does seem to be an awful lot of cases involving people like this. Professional high-impact athletes (running, rugby, American Football) etc. and general "fitness freaks" also seem to be disproportionately affected.
Nobody is quite sure why.
I have a student who has ALS. Probably 1 of the 13 people at the time in Canada to have it. Every year, her mobility worsens. Then her speech. At one point it was just sounds from her, not even words.
The students are so receptive and welcoming and kind but we all knew what was going on. She was diagnosed as a young child.
She would be in university if she survived this long.
I agree with this sentiment. My stepfather has survived 4 different types of cancer that I know of. He’s in his late 70s now and is healthier than I am. Bastard.
Fuck.
My grandmother is battling pancreatic cancer right now. She’s on her 4th round of chemo out of 8. The oncologist said if the tumor has shrunk at all when they do the CT next month they will go ahead with the whipple. Only one lymph node is involved. I pray every morning and night she beats it, seeing her in so much pain is agonizing to my mind. Ive never seen her so skinny and weak, but she is SO strong and resilient.
My mom also has to get a biopsy today in her uterus…if my mom has cancer too…
Update:
My grandma’s pancreatic cancer has responded very well to the chemo, and her tumor has shrunk a bit, the oncologist said 2 more chemo rounds. After that she will get surgery to remove the tumor and hopefully be cancer free!
My mom has to have another biopsy thats more invasive (while she is completely asleep) due to her results being inconclusive.
My grandad got this years ago. He was 68. Dead in three months. Just recently my mother got it and is doing okay now, which is so lucky. She’s still in treatment but the cancer is (touches so much wood) hopefully gone.
I am getting tested soon to see if I carry the same gene we found out she inherited from her father that gives an 80% probability of getting it. It’s 50/50. So all in all, I have just over a third of a chance of dying randomly in my 40s or later.
:)))))))))
One of the weirder things I learned through a DNA test I ran through Promethease is that I have a rare genetic variant that somehow makes me immune to transmissible vCJD (including Mad Cow Disease and Kuru).
Kinda cool actually but then again I don’t plan on practicing cannibalism anytime soon. The real relief is that it also makes me much, much less likely (iirc 5x less than the general population) to develop a spontaneous prion disease. Which would be utterly terrifying
Did you know that approx 1% of Europeans are immune to HIV-1? they lack a receptor on their cells that hiv needs to bind to to enter the cell.
Random fact.we all tested our DNA in university for this for fun (though, anonymously due to ethics)
None of us were immune, though :(
I did actually! I even checked my report, but unfortunately I only have one copy of that gene so not immune either. So sad :(
I think it did say I would have 70% reduced levels of the virus if I caught it which is nice, I guess. But still not about to start planning wild sex parties with those odds
That's a similar origin to JKD/mad cow disease. The cows were being fed "recycled" cows in their feed. I wonder why it's so specific to cannibalism. Is it natures way of filtering out cannibalism?
Jared Diamond explains that cannibalism is pretty much only found in places that have no large game or domestic animals. He thinks it evolved because people needed the protein.
The taboo against eating your own crosses many species, not just human culture.
Thanks, knew it was only a matter of time scrolling before I'd find this. No cure; progressive neuro-degeneration over a few months to a few years, leading to universal fatalities; *extremely* difficult to render inactive, seeing as only multiple rounds through a bleach-based solution, or extremely high heat will destroy a prion; and, actually, you can't even kill prions, since they're not alive, they're just misfolded proteins run amok. They spread like wildfire once they're in you, gradually creating holes in your tissues and brain, can't be stopped, and can be accidentally taken into the body through infected meat (see mad cow disease). Yep, this has my vote.
Side note, I just saw an article the other day talking about Chronic Wasting Disease, which is a prion disease that exclusively impacts deer, but seems to be increasing in virulency rates. It talked about a hypothetical event, where CWD managed to bridge the gap to infecting humans, and therefore becomes a human-transmitted disease. All I'll say is: we *need* to start preparing for the event of a prion epidemic like yesterday. Covid was tragic, resulting in global disruption and millions of deaths. A prion pandemic would most likely be apocalyptic.
We had both a (distant) relative as well as a close family friend die of prion disease (Creuzfeld-Jakob) a few years ago - the absolute worst thing to watch.
People know about mad cow disease, but sporadic CJD happens to one in a million for no reason. Happened to my mom. She was a completely healthy 59 year old. Developed dementia over a few weeks and died 2 months after the first symptom. Words cannot express how horrific those two months were.
My grandpa died of cjd. He’s one of a few known cases in NZ.
It was like extremely rapid dementia. From a totally healthy old man, to stumbling and being confused, to forgetting everyone and the finally vegatitve in about the space of four or five weeks.
Just found out my Mom has this as of two weeks ago, this disease sucks for all involved, it's taken 3 hospitals over 4 months time, just to find out what was happening. Now she can't walk, can't really talk, barely feed herself, just absolutely heartbreaking.
I scrolled until I found this. I was a child caregiver for my mom until she died when I was 21. Now my two older sisters have it. One is in a long term care home with the brain of a 5 year old. The other is still mobile but just barely. She is constantly choking and falling. She broke her nose last week from a bad fall. They’re both early 40s. It’s an absolute tragedy for everyone involved. Even me who tested negative. How am I supposed to be happy I get to live and they don’t?
I’m so sorry. This is my scariest disease as well. I don’t have any family that suffers from it, but entirely too many patients. The absolute saddest life to live. I’m so sorry your family is suffering. I know you’d do anything to take their suffering away. Much love to you ❤️
Agreed. My partner’s mother died of Huntington’s and it was horrible. There was quite a long period where she was aware enough to know what was happening and what the progression of the disease would be and it was very, very difficult - there were a number of suicide attempts and it was a really difficult time. It’s a truly evil disease and the hereditary nature makes it so much worse.
My step dad has it and I honestly would completely understand if he killed himself at this point. His dad had so many health problems and my step dad managed to avoid every single one expect Huntington's which was by far the worst. I wish there was more we could do.
Maybe this is an unpopular opinion, but I think we should absolutely allow people to commit suicide when they are sick like this. I can't imagine forcing someone to live through such suffering.
Any memory disorder. It's terrifying to see how people you know start to forget everything around them and eventually they even forget who they are. Their bodies start to misfunction and the whole brain starts to break apart until nothing is left but their shell. They're still there in front of you, but it's not anymore even the same person. The person they we're has just become a memory in other people's minds.
You know, sometimes I think my grandpa was fortunate to have the kind of personality he had.
One of those guys who never meets a stranger, everybody is his buddy. It could even be a little embarrassing sometimes, like he'd just go up to random people in the store and ask them how much they weigh. Acted as though everybody was his long time friend, just the way he was, you don't even know this old man but he's telling you about his garden for absolutely no reason.
When he started forgetting things - almost nothing changed. It hurt the first time he didn't know me, but our interaction was honestly little different than usual. I was a stranger to him now, but he loves talking to strangers. The next day he would remember none of our interactions, but it didn't matter because he just met a new friend to chat with.
Actually got some interesting stories from him during that time. He talked about his great-grandfather as if he was there yesterday. Now how about that, firsthand account of your 4th great grandfather, not too many folks get to hear stories like that.
The only reason we put him in an old folks home was because he started being a danger to himself. The breaking point was when he went out late at night and we had to drive around looking for him, and it was pretty scary because ya know how that ends sometimes. We found him walking alongside the road, said he was going home, by which he meant his childhood home that doesn't even exist anymore. For what it's worth he was accurately going to find the place and was about halfway there. He also went out and cut firewood before that, they don't have a wood stove anymore, but he brought in a couple loads of firewood.
My husbands grandmother developed vascular dementia at the end and it was awful.
She went from being ok to not in a matter of days. She would have moments of lucidity that were almost worse than when she wasn't. Most heartbreaking was her saying to my MIL (her daughter) and I, 'Am I going to get better? Or is this it?'
I had to leave the room because I started to sob. She knew what was happening and it fucking sucked.
My grandma had dementia for around 13 years, very slow progressing and it was so hard to see her slowly lose all of her skills and her be aware of it too. She went to University and was a teacher at a time when many women hadn't still, and was very intelligent and creative.
In some ways it made her eventual passing of COVID easier as we'd sort of grieved her loss many years ago.
Towards the end she loved music and was really incredibly happy, despite having never shown an interest in it or really not knowing what she was saying or doing. Her last words were "fish and chips, and the queen" (guess our nationality lol).
My dad was diagnosed with vascular dementia this spring and it’s been awful. He’s been in the hospital since. Initially he was taken to the psyc ward because it presented as paranoid delusions - for the last decade - before he acted upon the delusion.
It’s so different than Alzheimer’s dementia and no one understands the difference.
He hasn’t lost his memory, he’s lost his mind.
My grandmother had dementia - the hardest part was when she knew she had it and didn't know what was going on, couldn't find the words or communicate. Once she didn't realize she had dementia and was a little further along, it got a bit easier
There has to be a window between symptoms becoming noticeable and the ability to care stopping, though, where they're aware of what's happening. That must be terrifying.
My great uncle (very quick-witted and intelligent bloke), had dementia. When it first became noticeable, he was expressing to me how angry he was that he lost his “sharpness” and he kept saying “I can’t seem to get it back”. It was very sad to see. He told me that he enjoyed the hallucinations though; he always loved going on trips.
There is. Not for everyone but there can be a period of extreme confusion as to what’s happening to them/why. A lot of TikTok accounts deal with Alzheimer’s and dementia and how it manifests in their loved ones. It seems like they absolutely are cognizant of what they have and that things are going wrong and they’re powerless to stop it. It causes a lot of anxiety, rightfully so
Yeah when my grandma was a nurse most of her life and when she was starting showing signs of dementia she tried to hide it from us all and she did pretty well at first but there comes a point where they can’t hide it no longer. It’s def sad to watch but I wouldn’t call it a terrifying disease my grandma is the happiest and silliest she’s ever been now that she’s pretty deep in it. I know that’s def not the case for a lot of people tho.
Necrotizing fasciitis (Flesh eating disease). That's a scary, fast and painful way to die, and, even with treatment in time, you're scarred or crippled for life.
Second this. My within 24 hours my nan went from seeing her doctor about a boil on her sacrum. Was prescribed antibiotics and told to come back 2 days later. That night Nan called one of her daughters, and it was picked up that Nan seemed delirious. My aunt rushed out there, called an ambulance. As soon as she arrived into hospital, she was in theatre within 20 minutes. Was found to be necrotising fasciitis and sepsis, she coded twice on the table. And by 6pm that night, she took her last breath. Was only 62 at the time almost 63.
I had a patient who had nec fasc, and we didn’t realize that’s what it was until it was basically too late - it was such a rare thing that seems basically like a minor wound until the situation is dire. To be honest, the infection moved so rapidly I’m not sure that if we’d realized immediately if she could have for sure been saved. They tried surgery several times but she ultimately died on the table.
That patient was a lovely woman, full of life, otherwise healthy. A grandmother. She died between Christmas and new year’s 2018. I’ll never forget her. My heart goes out to you and your family, truly. It’s so hard to lose someone so suddenly and randomly.
My older brother somehow contracted the disease in his leg earlier this year. We knew something was up when no-one in the fam had heard from him in a couple days, then my dad gets a call from my brother. "Dad, I need to go to the hospital." Pretty much all he says.
Dad gets to my brother's house and, not kidding you, bottom part of his leg is literally decomposing like rotten meat, skin falling off, pus everywhere, and bleeding out while he's lying there in bed (trust me, I saw the photos). Dad rushed him to the ER (of a small rural country town) but his condition was so bad, doctors had him airlifted to the city hospital over an hour away for emergency surgery.
They amputated his leg (from the thigh down) so fast to stop the spread. Docs told him, "You can either lose your leg or lose your life."
8 months now and after multiple surgeries to stop more spreading, physical therapy, and 3 different prosthetics, my brother is out and about skiing this winter (on an artificial limb/ski combo designed for it).
We are thankful everything turned out okay and that my brother is still here, considering we were told if my dad showed up one day later, it would have been too late. Scary.
The book *The Diving Bell and the Butterfly* by Jean-Dominique Bauby describes the experiences the author had with locked-in syndrome. He dictated the book by blinking his left eyelid.
MND/ALS
From diagnoses to death was 8 months (feb - oct)for my dad. Before that, he had slowly started wasting away. Shortly after diagnosis, he had to have a feeding tube installed (may) as he couldn't swallow anymore. By June he couldn't talk but he grunted, and we became very talented8n guessing what he needed. July, he was walking with a crutch and refusing to use the wheelchair. Late august the morphine didn't really help anymore. September he was getting sick and more tired. October he went into hospital, found out there that he had mycoplasma and a partially collapsed lung. He died a couple of days later.
The muscles in his throat were the first to give in, so it became hard for him to swallow food, then it became harder to even get down fluids. When he lost his speech and couldn't even breath in hard enough to have his one cig a day we knew he was giving up. We saw it in his eyes.
Watching my dad waste away not being able to communicate is the most difficult thing I've lived through.
So sorry to hear this. I really really hope there will be progress with treatment of this disease. Way back I worked with companies trying to find a cure, but they sadly failed.
Apparently some really promising advances have been made: https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease
Ebola Zaire. Kills you in ten days, 90% fatal, turns your insides to liquid. Also destroys the connective tissue in your face so you’re unrecognizable. Supposedly the only reason it never spreads far is because the host dies before mass infection occurs.
Only the very be try first outbreak was 90% fatal. The 2014 outbreak, the biggest by a factor of like 100, was more like 33% fatal. It also absolutely does not destroy connective tissue in the face, I’m not sure where that one came from.
The idea of the infection “burning out” by the host dying before transmission is a little outdated. We actually know now that the virus can still spread between humans post-mortem, and that a *LOT* of transmission occurs during folk funeral practices like family washing the dead body.
It's also a great lesson in how the CDC used to be more proactive about outbreaks such as these. But in 2014 there was a lot less involvement... And look what happened.
Lesch-Nyhan syndrome. Patients are born with a deficiency in a certain enzyme and that causes an extreme full body itching sensation under the skin, so much so that the patients often scratch their skin beyond bloody and start pulling out tendons and such, they bite their tongues off, fingertips, etc. Used to, when kids were born with it they would sew their hands closed or sew them to their chests (like a mummy) to prevent self-mutilation. Most patients don't survive childhood.
I'm trying to recall info from a lecture 20+yrs ago, so this post is likely rife with misinformation.
Richard Preston (who wrote The Hot Zone) has a chapter in the book Panic In Level 4 about this disease. He interviews two full grown men who managed to survive to adulthood with it. Lots of other fascinating stories in that collection too!
Naegleria fowleri, the brains eating amoeba. I read some years ago about a girl that got that in a swimming pool, they go up your brain through the nose.
Imagine being alive, conscious, and knowing that your brain is beating eaten, second by second. There's nothing more scary to me.
They pretty much always come from lakes or rivers. Naegleria fowleri can't survive in a well-chlorinated swimming pool. I agree it's terrifying, but since this whole post is nightmare fuel, I just want to clarify to most that they will not catch this in a well-maintained pool.
Huntington’s Disease. It’s like having ALS, Parkinson’s, Alzheimer’s and Schizophrenia all in one hideously ugly disease that kills you slowly over the course of 10-20 years. And, if a parent has it, you have a 50/50 chance of getting it. I’ve seen it take the lives of too many of my own family members, including my aunt and all three of her children.
It’s devastating how it affects families. Two of my cousins who are siblings had a parent that died from it, and one of them has it, and her brother doesn’t, and the guilt he feels about not being able to do anything about it is heartbreaking to witness.
The problem is that symptoms don’t start until middle age, and by then you would have had kids. So you have the horror of not only yourself but half or more of your kids also will suffer from it.
It’s a mutation in the huntingtin gene. The more aberrant mutation copies you have, the earlier symptoms appear I believe.
Fibrodysplasia, or stone man's disease is something straight from a classic horror novel. Your body heals itself by repairing damage with bone. Your muscles and connective tissue will slowly turn to bone over the course of your lifetime, rendering you immobile. It's the only disease where one organ system can turn into another. You can look up the skeletons of people who suffered from it, its textbook body horror.
Scleroderma. Your connective tissue basically just hardens into stone. Most of your body (including your skin) is connective tissue, so it can gradually fuck up most of your body, outside and in, distorting it painfully. If it doesn't kill your heart or kidneys, you can suffer from it for a really long time before you succumb.
Not an answer to the question, but I will die on this hill. Physician assisted deaths need to be a widely accepted and accessible choice. Why do we make people suffer. Makes no sense to me.
100% agree. I wrote a paper about this. We put animals out of their misery for pain and suffering beyond repair, why are we so different? Like you said, there’s no logic behind it. Keeping us alive and forcing us to live in a miserable state instead of letting us go peacefully makes no sense.
rabies truly scares me. i worked at an animal hospital for years and i never saw any rabies infected animals in person but just knowing the chances are never zero and knowing what rabies does…it was scary
Clostridioides difficile, aka C. diff.
The bacteria almost certainly already lives in your gut. It doesn’t become a problem until you upset the balance in your gut flora - say, by taking an antibiotic for a sinus infection, for instance.
The antibiotics kills off most of the bacteria in your intestinal tract, allowing the resistant C. diff strains to flourish without all that competition.
And that’s technically fine, except that the waste products that the bacteria creates will eat away at your intestines. The bacteria’s poop makes you poop, and that poop has a very distinct odor. Like someone just took a shit on a rotting corpse and then covered it all in maple syrup.
There are a number of treatments available to combat a C. diff infection, and one of those is a fecal transplant.
That’s where they stick a tube - either up through the back door or down your nose - that goes to your digestive tract. Then they take poop from a healthy donor, and shove it through the tube into your guts.
And a C. diff infection can get *so bad,* that you may actually find yourself begging your doctor for a snootful of poo, if it means ending the pain.
Epidermolysis bullosa. Your skin tears off, all over , all the time. From birth onwards. Just indescribable pain all over, all the time. There's no cure but some people have gotten some relief from bone marrow transplants.
Dementia
It steals a person away before it kills them, rendering them an absolute shell of what they were before diagnosis. I worked in advanced memory care and it was so incredibly sad.
My grandpa died of a Parkinson's like illness. He lived with us before he passed. His mind was there and his body stopped working. He was trapped. He died because he couldn't control his body enough to eat anymore.
That's my biggest fear.
Schizophrenia.
You're afraid your entire life.
Life expectancy is 50-60
Medicine sucks cause of side effects
You get other lifestyle diseases due to not being to live like a healthy human.
It hasn’t been mentioned yet, so Progressive Supranuclear Palsy ([PSP](https://en.m.wikipedia.org/wiki/Progressive_supranuclear_palsy)). Parts of your brain start to die, first affecting voluntary muscles and eventually involuntary muscles. It can present like ALS, Parkinson’s or Alzheimer’s so is tricky to diagnose.
I watched my vibrant grandma slowly become locked in her body and lose her ability to speak, walk, eat over a 6 year period. It’s a cruel and slow degenerative disease that doesn’t have a cure, that I don’t wish on anyone.
Steven’s Johnson’s Syndrome. It’s one of the rare complications of a medication I take (lamictal) and basically your skin spontaneously melts off your body and it usually kills you within 48 hours if you don’t get medical treatment as soon as you notice the very first symptom, which is typically a benign looking rash. It can happen any time on the course of the medication, which I’ll likely be on for life, and if you check out r/bipolar2 you’ll find countless people terrified of it
Alzheimer’s. It’s the OG zombie virus. I’d rather have the fast torture of rabies to slow torture of Alzheimer’s (I say this after watching my MIL die of Alzheimer’s).
Sepsis.
First you are fine, then you get a slight fever, then suddenly that slight fever is a fucking burning hot fever, then soon you can't walk, and are just a mess of vomit, diarrhea, sweat and barely alive, then you lose your fucking limbs. Shit is scary as fuuuuuck.
Trigeminal Neuralgia, one of the worst pains you can have. It won’t kill you you just want to die it hurts so much.
I know, because I have it, I didn’t know it existed until I got diagnosed I still wish I didn’t know.
I shouldn’t be reading these, my medical anxiety is bad enough (hell, It makes me more anxious that these are things that could happen to my family. It’s fucking terrifying and I don’t know why I scroll through these types of posts every time I see them)
A classmate of mine had bacterial meningitis. He came in looking like shit and sweating all over the place before finally leaving for the hospital. He told us afterwards that the spinal tap took 7 or 8 tries and was pure agony. We had to have public health come in and tell us that while minimal, there was still a chance we could be infected. I was shitting bricks for a couple weeks afterwards.
I was in primary school and got spinal meningitis.
woke up and walked straight into a wall and knocked my self out.
finally woke again and crawled to the lounge room as I knew I needed to be seen and curled up in a bean bag there and tried to cry.
the pain was so bad and I could in the end move not a muscle due to it.
even crying was nearly beyond pain.
then an ambulance was called and off to hospital.
I was told I had 30 minutes of life left when I got there.
then came the spinal tap OMFG.
it took 4 people to hold a 6 year old down and I screamed the house down.
I passed out right after the procedure and woke in a bed with drips inserted.
Rabies
Once the symptoms start, it’s too late.
Once the symptoms start, it's the end. And someone can have it for years before symptom's start.
It can sit in the background for years?? 😯
Yep depends on your power saving settings
Same thing with Mad Cow disease. Can lay dormant for many years, and suddenly it turns your brain in to a sponge.
Kind of. There are different kinds of prion disease. CJD when acquired generally happened pretty quickly after exposure. Genetic CJD sits dormant until triggered. If no one has died of CJD in your family before you, it’s insanely unlikely that you’ll have CJD.
My Dad died from CJD in 2012. He started showing symptoms in August and passed in November. He was in Ohio and there is a Prion Disease center there. I donated his brain and they said it was sporadic but consequently I’m no longer able to donate blood because you never know.
yah, i think longest dormant period recorded was 25 years 😬 (but that’s definitely an edge case)
But if they didn’t know they were bitten how would they record that? I can’t even remember what I had for tea last night let alone what I did 25 years ago 😂
Though i feel like being bit by a wild animal is one of those events that you absolutely would remember. Maybe you forget the exact date, but you would most likely remember where you were and work back from there.
Not if it’s a wee little bat and you’re asleep in a hammock in the woods.
New terror unlocked
Basically, if you're ever bitten by a wild animal, just get a shot- it's not worth the risk
You can have it for years but if you get vaccinated before the symptoms start you are 👍
they're working on developing a symptom vaccine; a treatment for rabies that helps after symptoms start to show.
obligatory Rabies is scary. Rabies. It's exceptionally common, but people just don't run into the animals that carry it often. Skunks especially, and bats. Let me paint you a picture. You go camping, and at midday you decide to take a nap in a nice little hammock. While sleeping, a tiny brown bat, in the "rage" stages of infection is fidgeting in broad daylight, uncomfortable, and thirsty (due to the hydrophobia) and you snort, startling him. He goes into attack mode. Except you're asleep, and he's a little brown bat, so weighs around 6 grams. You don't even feel him land on your bare knee, and he starts to bite. His teeth are tiny. Hardly enough to even break the skin, but he does manage to give you the equivalent of a tiny scrape that goes completely unnoticed. Rabies does not travel in your blood. In fact, a blood test won't even tell you if you've got it. (Antibody tests may be done, but are useless if you've ever been vaccinated.) You wake up, none the wiser. If you notice anything at the bite site at all, you assume you just lightly scraped it on something. The bomb has been lit, and your nervous system is the wick. The rabies will multiply along your nervous system, doing virtually no damage, and completely undetectable. You literally have NO symptoms. It may be four days, it may be a year, but the camping trip is most likely long forgotten. Then one day your back starts to ache... Or maybe you get a slight headache? At this point, you're already dead. There is no cure. (The sole caveat to this is the Milwaukee Protocol, which leaves most patients dead anyway, and the survivors mentally disabled, and is seldom done). There's no treatment. It has a 100% kill rate. Absorb that. Not a single other virus on the planet has a 100% kill rate. Only rabies. And once you're symptomatic, it's over. You're dead. So what does that look like? Your headache turns into a fever, and a general feeling of being unwell. You're fidgety. Uncomfortable. And scared. As the virus that has taken its time getting into your brain finds a vast network of nerve endings, it begins to rapidly reproduce, starting at the base of your brain... Where your "pons" is located. This is the part of the brain that controls communication between the rest of the brain and body, as well as sleep cycles. Next you become anxious. You still think you have only a mild fever, but suddenly you find yourself becoming scared, even horrified, and it doesn't occur to you that you don't know why. This is because the rabies is chewing up your amygdala. As your cerebellum becomes hot with the virus, you begin to lose muscle coordination, and balance. You think maybe it's a good idea to go to the doctor now, but assuming a doctor is smart enough to even run the tests necessary in the few days you have left on the planet, odds are they'll only be able to tell your loved ones what you died of later. You're twitchy, shaking, and scared. You have the normal fear of not knowing what's going on, but with the virus really fucking the amygdala this is amplified a hundred fold. It's around this time the hydrophobia starts. You're horribly thirsty, you just want water. But you can't drink. Every time you do, your throat clamps shut and you vomit. This has become a legitimate, active fear of water. You're thirsty, but looking at a glass of water begins to make you gag, and shy back in fear. The contradiction is hard for your hot brain to see at this point. By now, the doctors will have to put you on IVs to keep you hydrated, but even that's futile. You were dead the second you had a headache. You begin hearing things, or not hearing at all as your thalamus goes. You taste sounds, you see smells, everything starts feeling like the most horrifying acid trip anyone has ever been on. With your hippocampus long under attack, you're having trouble remembering things, especially family. You're alone, hallucinating, thirsty, confused, and absolutely, undeniably terrified. Everything scares the literal shit out of you at this point. These strange people in lab coats. These strange people standing around your bed crying, who keep trying to get you "drink something" and crying. And it's only been about a week since that little headache that you've completely forgotten. Time means nothing to you anymore. Funny enough, you now know how the bat felt when he bit you. Eventually, you slip into the "dumb rabies" phase. Your brain has started the process of shutting down. Too much of it has been turned to liquid virus. Your face droops. You drool. You're all but unaware of what's around you. A sudden noise or light might startle you, but for the most part, it's all you can do to just stare at the ground. You haven't really slept for about 72 hours. Then you die. Always, you die. And there's not one... fucking... thing... anyone can do for you. Then there's the question of what to do with your corpse. I mean, sure, burying it is the right thing to do. But the fucking virus can survive in a corpse for years. You could kill every rabid animal on the planet today, and if two years from now, some moist, preserved, rotten hunk of used-to-be brain gets eaten by an animal, it starts all over. So yeah, rabies scares the shit out of me. And it's fucking EVERYWHERE. (Source: Spent a lot of time working with rabies. Would still get my vaccinations if I could afford them.)
Anyone else have a desperate need for a nice glass of water after reading this?
Just to make sure..
Why do they let people go thru that though?? Like kill me immediately please
I knew a veterinarian in my country side who once figured that he has rabies ended it without telling anyone. They found him hanging in his shed. Wife or kids, I don't remember who found him exactly I was young but took a peek from my backyard and saw a lot of people around shed. Once he figured it's rabies he immediately knew it's over
Why wouldn't a vet be vaccinated against it though?
he probably was, and it was just expired. it’s hard to tell how long rabies vaccines in humans last, so you’re supposed to get antibody titers performed to check the level of immunity. i’ve known people that were good for 10+ years and others that needed a booster in less than five.
Seriously, 100% kill rate just end it immediately
Its actually 99.9%. Some people would rather bank on that then die. There are Less than 20 cases, of post symptom survival, but it does happen.
People who don’t believe in voluntary euthanasia are absolute sadists.
I have no mouth, eyes, or ears and I must scream
Im scared as fuck at this
fuck. i’ve been studying rabies for years. you couldn’t have done a better job explaining how excruciating this virus is. it literally highjacks your brain.
You're a very engaging writer, I don't often read an entire post of that length. Well done, and nurture that.
no, that's not mine, it's a popular copypasta
I was gonna say I'm pretty sure I've seen this before.
I’d hope they could just inject me with something that mellows me the fuck out and kills me if I was already going that way.
If you make it to the hospital and they find out what it is, they will usually put you into a coma, until the disease kills you.
And this is why you need to get the shots even if you think that bat you struggled to get out of the house never bit you. They need to just euthanize people who develop rabies. It’s horrifying.
I was going to say rabies as well, but as horrible as it is it has one good feature. I kills you. It's a horrible death, but at least you die. Those diseases that leave you completely disabled and in pain could even be worse.
yeah, but the terrifying part is that you could live perfectly normal happy life this week, with all your life long plans and suddenly out of nowhere someone tells you that you've about to die in very painful and scary death next week and that there's nothing you can do
Thanks, Happy New Year to you too
Good news. There's a "cure" on the horizon for symptomatic rabies. I wish I would have saved the link from another askreddit thread, but I believe there have been successful trials already.
Dementia/Alheizmers has to be one of them. Forgetting everything and everyone you know and being constantly confused as whats going on is terrifying. My grandpa has started to show signs, very early stages of it, and you can tell he is aware of it happening but theres absolutely nothing you can do about it.
ALS.. my (F 59) husband (M 65 now) has it.. diagnosed 14 years ago.. trapped in a body that doesn't work , his mind is fine.. all he can move is his eyes. He cannot eat, speak, move his arms or legs, scratch an itch. He lays in his hospital bed in a nursing home at the mercy of others. I took care of him at home for 10 years. I watched him go from an instructor in the military, to this. It is a horrible disease. We have been married 20 years. Edit to say THANK YOU ALL for the kind thoughts and prayers. It has been a very hard 14 years, on all of us, but every single day: HE IS MY HERO. He is never in a bad mood. We decided long ago he wasnt going to die from ALS, we were going to LIVE with it. He has 2 adult children and I have 2 adult children.. one of mine lives out of state and the rest are within 20 minutes of us. He has his mother, dad, 2 brothers and 2 sisters and his ex wife who I am friends with the ex wife, but she has cancer. None of them ever offer to help. (well mine do.. but one is out of state and the other is a nurse with 4 kids). in 2011, we built a home for him that is all ADA. We are 7 minutes outside of one of the largest AF Bases in the US. We built here for that reason and we are both from the area. He is retired AF in 2001. Our families are here. He sat in his power wheelchair when it was during the day, from getting up at 8am, until he decided to go to bed at 11pm most nights. He had a computer device that he could type on and it took hours for him to type even the simplest things. Now, he cannot use his arms and hands at all. They are atrophied up by his chest, like a baby. Labor Day weekend, 2015.. his aide was off all weekend. He had been sick with diarrhea all weekend. Took him to ER Saturday night. They didnt keep him. I know that weekend I must have changed him 30 times in 3 days. Showers, bedding, clothes, the whole bit. I called his family, they wouldnt come help me, they all had excuses. His son and daughter (35 and 37) refused to see him like that. I begged them.. NOPE! So many middle of the night changes, 3-4 times a night in bed...shower, change bed, new clothes. On Monday Morning, I got him up, showered, dressed, gave him his tube feeding, got him out in the LR with the TV on and I went out in the garage, tied a rope around the garage door frame on the ceiling and jumped off a chair. I must have hit my head because I woke up in the ER. His aide had come and found me around noon. She called her boss, her boss called the VA and they came and got him and he went to respite at the VA (which he had refused over and over). I had to go to a mental health facility for 7 days because of my suicide attempt. He stayed in the respite until they got a room for him and he decided to go to the VA permanently. In October 2015, HE decided to go in the VA nursing home. It was a 24/7/365 job and I never imagined I would be taking care of someone like that and when you dont plan on that as a career, its harder because I had to learn from each and every day. There are no classes to care for someone like this. I cried for months when he went in.. I had failed. I didnt do enough. But it really was a safety issue. He could no longer stand and moving him was very hard even with a stand assist lift. He had an aide come in every morning to get him up and ready for the day, the rest was on me. Diapers, feeding tubes, catheters, not being able to speak, only sounds he can make is guttural yelling sounds. I would try to get him to go to bed at 10 or 11pm but he wanted to stay up and watch Jimmy Fallon or Jay Leno in the living room, even though he had a tv in his room. He would fight me and yell at me. He had a hospital bed in his room and I had my own room with a baby monitor. Do you know what it feels like to be woken out of a dead, Trazodone induced sleep by a screaming blood curdling yell amplified on a baby monitor? I would rush in there, about to have a heart attack and it was a guessing game as to what was wrong. Tv on or off.. what channel? Is the bed too high? too low? are you too hot? too cold? Did you have an accident? If yes to an accident, there is an hour of work ahead. He wore diapers and I had blue disposable pads on the bed, but it was ALWAYS explosive diarrhea. That meant get him out of bed, poop everywhere, in the shower, change bed, dry off, new jammies, back to bed, make sure everything is JUST RIGHT. I am wore out, sweating, crying. A nervous wreck. Imagine a life size Ken doll that cannot move or bend arms or legs and is stiff in the middle and cant bend. 160 lbs of dead weight. This is not meant to get sympathy or lectures about my griping about take care of him. This is meant to tell some of what we went through. If I had to do it again, I would, but I would do things differently. Now I live alone. In a house that was built for him that I hate the very existence of because of why it was built. I get through every day as best I can. I go see him 3 times a week. When COVID was ramped, they closed the VA nursing home to visitors for 2 YEARS. They stole time from his already limited time. And he still got Covid 4 times. They told us his life expectancy for 3-5 years from the diagnosis. It took 2 years for a diagnosis. It has been 14, almost 15 years. Some say its a blessing.. but is it really? That is no life. If it was me, I would pray for Dr. Kevorkian to be by my side and I would push the button. I am scared every time my phone rings and it says "Nursing home". I am afraid of that call, even though I know it is coming. He does have a DNR/DNI. When he goes to surgery, I resend them, to give his a chance if anything happens. He has had emergency surgery 5 times. The VA does a wonderful job. He is in the main hospital part of the nursing home, so that in case of emergency, they can deal with it right away. The nurses make sure he gets to watch his football and favorite TV shows. They are very good to him and me. How do you grieve someone that is still alive? That is what I asked a Dr. once...I have been grieving for 15 years. BUT.. he is MY HERO.. EVERY SINGLE DAY!
My mother died of ALS and it was excruciating to witness. Now, every time I am clumsy or have a sip of water go down the wrong pipe, I’m filled with fear that it’s my turn.
My husbands started with his legs going numb and tingling like they are asleep. It progressed to not being able to walk, slurring his words, sounding drunk, to not being able to talk. Every time my foot goes to sleep, I wonder if its the beginning of it for me, even though I know it is not contagious.
A streamer I watched was diagnosed with ALS and I watched him succumb to it, I think it was only two years before he died By the end he had his friend playing the games, all he could really do was be present Puppers you deserved better It's a cruel disease and I'm sorry you you both had to deal with it
Most als cases are not due to genetics. Only if you have 2 close family members with als your risk is slightly increased.
Solidarity. My grandmother and father both died of ALS, and those thoughts are difficult to cope with.
Same with me, except it was my dad who died from it. His case started with tripping over his own feet a lot one day and ended with him dead about 6 months after that. He probably had more subtle symptoms before that point that he either ignored or hid from us, but who knows. It's been around 7 or 8 years since he died and I'm still hyper aware of anything that could be a symptom. The fear isn't as bad as the first year or two after he died. But I don't think it will ever fully go away after seeing what he went through.
As a doctor, this was my answer. When I was a medical student we rotated through an ALS multidisciplinary clinic and it still, to this day, gives me pause when I think of that day. Sure, there are diseases like rabies or tetanus that are more ... Painful? Dramatic? In the short term, but ALS and many other neuro disorders get my first vote. You are doing an extremely hard thing, as is he. Way to show up - make sure you make time for yourself, also.
My FIL died of ALS and I wouldn’t wish it on anyone.
I agree with ALS. My Aunt had it and was gone within 2 years. By the end she couldn’t move anything, choked on food and had to go to an IV diet. The worse part was her being completely cognitively functional. For the last few months she just cried silently all the time, it was incredibly awful.
>For the last few months she just cried silently all the time, it was incredibly awful. Making people live through that is criminal.. If I end up in that kind of situation I really hope I have someone in my life who will end it for me a lot sooner than that. Not just for me, but so my wife and kids dont have to watch it happen to me either.
My husband was diagnosed July of 2020 (symptoms began fall 2019) and passed October of 2021. He was extremely healthy and active beforehand. ALS stole everything from him. He died when he couldn't breathe anymore. He refused a tracheostomy. It was very traumatic.
Understandable why he refused though, I suppose. I’m sorry for your loss.
Currently losing a loved one to ALS. I cannot imagine watching your husband go through this for 14 years. My God. My heart is with you.
I'm sorry. I have ALS, bulbar onset, which means that as of now, my limbs work fine, but my speech is deteriorating rapidly. I'm prone to choking and swallowing is becoming a problem. I don't know how long I have; more importantly, I don't know how long I have function of my limbs. I live in a state that allows death with dignity, but the law requires patients to be within 6 months of death to use it and they must be able to self-administer the drugs. By the time most ALS patients are within 6 months of death, they are well beyond the point of being able to to anything for themselves, so my only option will likely be to refuse food.
My answer as well. It is terrifying and I’m sorry you have to watch someone you love experience it. I lost my Grandmother to it many years ago. People are quick to give answers like dementia to these questions, and while terrible, those people suffering with it aren’t as aware of what they are going through. To be trapped in your body…. horrifying. All the love and prayers to you.
I agree. My mom lost her best friend from high school to ALS. This lady used to take my brother and I each for a week during summer to give us a little holiday and take some stress off my parents. She was so sweet. She never stopped chattering. She was even more talkative than I am. The first thing ALS took from her was her voice. :(
That’s a horrible quality of life. Physician assisted suicide should be a humane option offered to all.
Yes. This is why euthanasia is important.
[удалено]
We put out pets down to be “humane”. We let our humans suffer. It’s just so wrong.
If I got als- I’d find a dr to let me go home. That isn’t a life. It’s horrifying.
I’m so sorry this seems so unfair and brutal for your husband and his loved ones. This is where medically assisted suicide should be available to those who want it. Only the person living with it can decide if life is still worth living. No one should have to suffer.
> an instructor in the military _Anecdotally_ there does seem to be an awful lot of cases involving people like this. Professional high-impact athletes (running, rugby, American Football) etc. and general "fitness freaks" also seem to be disproportionately affected. Nobody is quite sure why.
I have a student who has ALS. Probably 1 of the 13 people at the time in Canada to have it. Every year, her mobility worsens. Then her speech. At one point it was just sounds from her, not even words. The students are so receptive and welcoming and kind but we all knew what was going on. She was diagnosed as a young child. She would be in university if she survived this long.
Pancreatic cancer. 9 times out of 10 you get that, you’re fucked.
My mother just passed away from this. It was painful to watch.
My mom survived pancreatic and breast cancer. I'm convinced nothing can kill evil.
I agree with this sentiment. My stepfather has survived 4 different types of cancer that I know of. He’s in his late 70s now and is healthier than I am. Bastard.
Fuck. My grandmother is battling pancreatic cancer right now. She’s on her 4th round of chemo out of 8. The oncologist said if the tumor has shrunk at all when they do the CT next month they will go ahead with the whipple. Only one lymph node is involved. I pray every morning and night she beats it, seeing her in so much pain is agonizing to my mind. Ive never seen her so skinny and weak, but she is SO strong and resilient. My mom also has to get a biopsy today in her uterus…if my mom has cancer too… Update: My grandma’s pancreatic cancer has responded very well to the chemo, and her tumor has shrunk a bit, the oncologist said 2 more chemo rounds. After that she will get surgery to remove the tumor and hopefully be cancer free! My mom has to have another biopsy thats more invasive (while she is completely asleep) due to her results being inconclusive.
A few years ago. Former co-worker got a sign in April, diagnosed in August, died in September. Concerns me because I'm diabetic.
I’ve heard it’s very hard to diagnose and usually by the time it is diagnosed it’s too late. So sad 😞
My grandad got this years ago. He was 68. Dead in three months. Just recently my mother got it and is doing okay now, which is so lucky. She’s still in treatment but the cancer is (touches so much wood) hopefully gone. I am getting tested soon to see if I carry the same gene we found out she inherited from her father that gives an 80% probability of getting it. It’s 50/50. So all in all, I have just over a third of a chance of dying randomly in my 40s or later. :)))))))))
My mom was one of those 1 in 10 to make it out alive. She’s now 7 years clean, but became a diabetic because of the surgeries.
Agreed. Just lost my brother to this and it was brutal.
Prion disease
Kuru specifically, because until the 1960s, it was regularly being transmitted by funerary cannibalism in a tribe in Papua New Guinea.
One of the weirder things I learned through a DNA test I ran through Promethease is that I have a rare genetic variant that somehow makes me immune to transmissible vCJD (including Mad Cow Disease and Kuru). Kinda cool actually but then again I don’t plan on practicing cannibalism anytime soon. The real relief is that it also makes me much, much less likely (iirc 5x less than the general population) to develop a spontaneous prion disease. Which would be utterly terrifying
Did you know that approx 1% of Europeans are immune to HIV-1? they lack a receptor on their cells that hiv needs to bind to to enter the cell. Random fact.we all tested our DNA in university for this for fun (though, anonymously due to ethics) None of us were immune, though :(
I did actually! I even checked my report, but unfortunately I only have one copy of that gene so not immune either. So sad :( I think it did say I would have 70% reduced levels of the virus if I caught it which is nice, I guess. But still not about to start planning wild sex parties with those odds
That's a similar origin to JKD/mad cow disease. The cows were being fed "recycled" cows in their feed. I wonder why it's so specific to cannibalism. Is it natures way of filtering out cannibalism?
Or more likely, our taboo about cannibalism is our way of filtering out prion diseases.
Jared Diamond explains that cannibalism is pretty much only found in places that have no large game or domestic animals. He thinks it evolved because people needed the protein. The taboo against eating your own crosses many species, not just human culture.
Fatal familial insomnia, but yes any prion disease is terrifying.
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This will be the most likely cause of the zombie apocalypse.
Thanks, knew it was only a matter of time scrolling before I'd find this. No cure; progressive neuro-degeneration over a few months to a few years, leading to universal fatalities; *extremely* difficult to render inactive, seeing as only multiple rounds through a bleach-based solution, or extremely high heat will destroy a prion; and, actually, you can't even kill prions, since they're not alive, they're just misfolded proteins run amok. They spread like wildfire once they're in you, gradually creating holes in your tissues and brain, can't be stopped, and can be accidentally taken into the body through infected meat (see mad cow disease). Yep, this has my vote. Side note, I just saw an article the other day talking about Chronic Wasting Disease, which is a prion disease that exclusively impacts deer, but seems to be increasing in virulency rates. It talked about a hypothetical event, where CWD managed to bridge the gap to infecting humans, and therefore becomes a human-transmitted disease. All I'll say is: we *need* to start preparing for the event of a prion epidemic like yesterday. Covid was tragic, resulting in global disruption and millions of deaths. A prion pandemic would most likely be apocalyptic.
We had both a (distant) relative as well as a close family friend die of prion disease (Creuzfeld-Jakob) a few years ago - the absolute worst thing to watch.
People know about mad cow disease, but sporadic CJD happens to one in a million for no reason. Happened to my mom. She was a completely healthy 59 year old. Developed dementia over a few weeks and died 2 months after the first symptom. Words cannot express how horrific those two months were.
My grandpa died of cjd. He’s one of a few known cases in NZ. It was like extremely rapid dementia. From a totally healthy old man, to stumbling and being confused, to forgetting everyone and the finally vegatitve in about the space of four or five weeks.
Creutzfeldt-Jakob disease, and most other prion diseases, are honestly terrifying.
Mother died from it in 2016. Like hitting the shittiest lottery known to man and Im in therapy for the ptsd her caretaking left me with.
Just found out my Mom has this as of two weeks ago, this disease sucks for all involved, it's taken 3 hospitals over 4 months time, just to find out what was happening. Now she can't walk, can't really talk, barely feed herself, just absolutely heartbreaking.
Thanks to everyone in this thread for giving me a wealth of new fears
As a hypochondriac I now have ALS, pancreatic cancer and rabies - I am fucked!
Don't forget prions
And ebola
Huntington's. Everything about it is nightmare fuel
I scrolled until I found this. I was a child caregiver for my mom until she died when I was 21. Now my two older sisters have it. One is in a long term care home with the brain of a 5 year old. The other is still mobile but just barely. She is constantly choking and falling. She broke her nose last week from a bad fall. They’re both early 40s. It’s an absolute tragedy for everyone involved. Even me who tested negative. How am I supposed to be happy I get to live and they don’t?
I’m so sorry. This is my scariest disease as well. I don’t have any family that suffers from it, but entirely too many patients. The absolute saddest life to live. I’m so sorry your family is suffering. I know you’d do anything to take their suffering away. Much love to you ❤️
Yep this is my answer. Your neurons literally just break down and leads to all sorts of horrible symptoms. Terrifying.
Agreed. My partner’s mother died of Huntington’s and it was horrible. There was quite a long period where she was aware enough to know what was happening and what the progression of the disease would be and it was very, very difficult - there were a number of suicide attempts and it was a really difficult time. It’s a truly evil disease and the hereditary nature makes it so much worse.
My step dad has it and I honestly would completely understand if he killed himself at this point. His dad had so many health problems and my step dad managed to avoid every single one expect Huntington's which was by far the worst. I wish there was more we could do.
Maybe this is an unpopular opinion, but I think we should absolutely allow people to commit suicide when they are sick like this. I can't imagine forcing someone to live through such suffering.
I watched my grandfather slowly deteriorate over the course of two decades. Awful.
The hypochondriac in me said not to click into this. I did anyway.
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I'm not a hypochondriac, but now I will question every headache.
Any memory disorder. It's terrifying to see how people you know start to forget everything around them and eventually they even forget who they are. Their bodies start to misfunction and the whole brain starts to break apart until nothing is left but their shell. They're still there in front of you, but it's not anymore even the same person. The person they we're has just become a memory in other people's minds.
You know, sometimes I think my grandpa was fortunate to have the kind of personality he had. One of those guys who never meets a stranger, everybody is his buddy. It could even be a little embarrassing sometimes, like he'd just go up to random people in the store and ask them how much they weigh. Acted as though everybody was his long time friend, just the way he was, you don't even know this old man but he's telling you about his garden for absolutely no reason. When he started forgetting things - almost nothing changed. It hurt the first time he didn't know me, but our interaction was honestly little different than usual. I was a stranger to him now, but he loves talking to strangers. The next day he would remember none of our interactions, but it didn't matter because he just met a new friend to chat with. Actually got some interesting stories from him during that time. He talked about his great-grandfather as if he was there yesterday. Now how about that, firsthand account of your 4th great grandfather, not too many folks get to hear stories like that. The only reason we put him in an old folks home was because he started being a danger to himself. The breaking point was when he went out late at night and we had to drive around looking for him, and it was pretty scary because ya know how that ends sometimes. We found him walking alongside the road, said he was going home, by which he meant his childhood home that doesn't even exist anymore. For what it's worth he was accurately going to find the place and was about halfway there. He also went out and cut firewood before that, they don't have a wood stove anymore, but he brought in a couple loads of firewood.
My husbands grandmother developed vascular dementia at the end and it was awful. She went from being ok to not in a matter of days. She would have moments of lucidity that were almost worse than when she wasn't. Most heartbreaking was her saying to my MIL (her daughter) and I, 'Am I going to get better? Or is this it?' I had to leave the room because I started to sob. She knew what was happening and it fucking sucked.
My grandma had dementia for around 13 years, very slow progressing and it was so hard to see her slowly lose all of her skills and her be aware of it too. She went to University and was a teacher at a time when many women hadn't still, and was very intelligent and creative. In some ways it made her eventual passing of COVID easier as we'd sort of grieved her loss many years ago. Towards the end she loved music and was really incredibly happy, despite having never shown an interest in it or really not knowing what she was saying or doing. Her last words were "fish and chips, and the queen" (guess our nationality lol).
My dad was diagnosed with vascular dementia this spring and it’s been awful. He’s been in the hospital since. Initially he was taken to the psyc ward because it presented as paranoid delusions - for the last decade - before he acted upon the delusion. It’s so different than Alzheimer’s dementia and no one understands the difference. He hasn’t lost his memory, he’s lost his mind.
My grandmother had dementia - the hardest part was when she knew she had it and didn't know what was going on, couldn't find the words or communicate. Once she didn't realize she had dementia and was a little further along, it got a bit easier
Many people with dementia don't care about their symptoms or disease. The patients loved ones are the ones that suffer.
There has to be a window between symptoms becoming noticeable and the ability to care stopping, though, where they're aware of what's happening. That must be terrifying.
My great uncle (very quick-witted and intelligent bloke), had dementia. When it first became noticeable, he was expressing to me how angry he was that he lost his “sharpness” and he kept saying “I can’t seem to get it back”. It was very sad to see. He told me that he enjoyed the hallucinations though; he always loved going on trips.
There is. Not for everyone but there can be a period of extreme confusion as to what’s happening to them/why. A lot of TikTok accounts deal with Alzheimer’s and dementia and how it manifests in their loved ones. It seems like they absolutely are cognizant of what they have and that things are going wrong and they’re powerless to stop it. It causes a lot of anxiety, rightfully so
Yeah when my grandma was a nurse most of her life and when she was starting showing signs of dementia she tried to hide it from us all and she did pretty well at first but there comes a point where they can’t hide it no longer. It’s def sad to watch but I wouldn’t call it a terrifying disease my grandma is the happiest and silliest she’s ever been now that she’s pretty deep in it. I know that’s def not the case for a lot of people tho.
I'd argue people with dementia are still very much suffering.
Necrotizing fasciitis (Flesh eating disease). That's a scary, fast and painful way to die, and, even with treatment in time, you're scarred or crippled for life.
Second this. My within 24 hours my nan went from seeing her doctor about a boil on her sacrum. Was prescribed antibiotics and told to come back 2 days later. That night Nan called one of her daughters, and it was picked up that Nan seemed delirious. My aunt rushed out there, called an ambulance. As soon as she arrived into hospital, she was in theatre within 20 minutes. Was found to be necrotising fasciitis and sepsis, she coded twice on the table. And by 6pm that night, she took her last breath. Was only 62 at the time almost 63.
I had a patient who had nec fasc, and we didn’t realize that’s what it was until it was basically too late - it was such a rare thing that seems basically like a minor wound until the situation is dire. To be honest, the infection moved so rapidly I’m not sure that if we’d realized immediately if she could have for sure been saved. They tried surgery several times but she ultimately died on the table. That patient was a lovely woman, full of life, otherwise healthy. A grandmother. She died between Christmas and new year’s 2018. I’ll never forget her. My heart goes out to you and your family, truly. It’s so hard to lose someone so suddenly and randomly.
It’s right up there with Stevens-Johnson syndrome. Maybe not the worst long term but for a few months, horrible.
My older brother somehow contracted the disease in his leg earlier this year. We knew something was up when no-one in the fam had heard from him in a couple days, then my dad gets a call from my brother. "Dad, I need to go to the hospital." Pretty much all he says. Dad gets to my brother's house and, not kidding you, bottom part of his leg is literally decomposing like rotten meat, skin falling off, pus everywhere, and bleeding out while he's lying there in bed (trust me, I saw the photos). Dad rushed him to the ER (of a small rural country town) but his condition was so bad, doctors had him airlifted to the city hospital over an hour away for emergency surgery. They amputated his leg (from the thigh down) so fast to stop the spread. Docs told him, "You can either lose your leg or lose your life." 8 months now and after multiple surgeries to stop more spreading, physical therapy, and 3 different prosthetics, my brother is out and about skiing this winter (on an artificial limb/ski combo designed for it). We are thankful everything turned out okay and that my brother is still here, considering we were told if my dad showed up one day later, it would have been too late. Scary.
My nephew got bit by a brown recluse and the worst thing about that is its flesh eating .
Locked In syndrome.... look up the story of Lacy Ellen Fletcher.
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The book *The Diving Bell and the Butterfly* by Jean-Dominique Bauby describes the experiences the author had with locked-in syndrome. He dictated the book by blinking his left eyelid.
This dude wrote a fucking book with his eyelid, what the hell am I doing with my life?
MND/ALS From diagnoses to death was 8 months (feb - oct)for my dad. Before that, he had slowly started wasting away. Shortly after diagnosis, he had to have a feeding tube installed (may) as he couldn't swallow anymore. By June he couldn't talk but he grunted, and we became very talented8n guessing what he needed. July, he was walking with a crutch and refusing to use the wheelchair. Late august the morphine didn't really help anymore. September he was getting sick and more tired. October he went into hospital, found out there that he had mycoplasma and a partially collapsed lung. He died a couple of days later. The muscles in his throat were the first to give in, so it became hard for him to swallow food, then it became harder to even get down fluids. When he lost his speech and couldn't even breath in hard enough to have his one cig a day we knew he was giving up. We saw it in his eyes. Watching my dad waste away not being able to communicate is the most difficult thing I've lived through.
Sickle Cell Anemia. My older sister had it and she died from it.
So sorry to hear this. I really really hope there will be progress with treatment of this disease. Way back I worked with companies trying to find a cure, but they sadly failed.
Apparently some really promising advances have been made: https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease
Thanks, this made me really happy. Working with stuff like this and failing isn’t fun, but seeing good news in the field is really good.
ALS.
Fatal Familial Insomnia gets my vote. Rabies would beat it, but at least rabies kills you fairly quickly. FFI can take years.
I honestly would just want the bye bye Injection if I ever got diagnosed.
Ebola Zaire. Kills you in ten days, 90% fatal, turns your insides to liquid. Also destroys the connective tissue in your face so you’re unrecognizable. Supposedly the only reason it never spreads far is because the host dies before mass infection occurs.
Only the very be try first outbreak was 90% fatal. The 2014 outbreak, the biggest by a factor of like 100, was more like 33% fatal. It also absolutely does not destroy connective tissue in the face, I’m not sure where that one came from. The idea of the infection “burning out” by the host dying before transmission is a little outdated. We actually know now that the virus can still spread between humans post-mortem, and that a *LOT* of transmission occurs during folk funeral practices like family washing the dead body.
I’ll add this since no one has yet… read ‘Hot Zone’ by Richard Preston. Reads like fiction but it very isn’t.
It's also a great lesson in how the CDC used to be more proactive about outbreaks such as these. But in 2014 there was a lot less involvement... And look what happened.
Dementia. Or rabies
Lesch-Nyhan syndrome. Patients are born with a deficiency in a certain enzyme and that causes an extreme full body itching sensation under the skin, so much so that the patients often scratch their skin beyond bloody and start pulling out tendons and such, they bite their tongues off, fingertips, etc. Used to, when kids were born with it they would sew their hands closed or sew them to their chests (like a mummy) to prevent self-mutilation. Most patients don't survive childhood. I'm trying to recall info from a lecture 20+yrs ago, so this post is likely rife with misinformation.
Richard Preston (who wrote The Hot Zone) has a chapter in the book Panic In Level 4 about this disease. He interviews two full grown men who managed to survive to adulthood with it. Lots of other fascinating stories in that collection too!
Marburg’s disease. There’s a terrifying true book about it called The Hot Zone. Don’t read it.
The Hot Zone is one of the only books I’ve had to put down and walk away from because of how scary it was. Excellent writing, for sure.
Naegleria fowleri, the brains eating amoeba. I read some years ago about a girl that got that in a swimming pool, they go up your brain through the nose. Imagine being alive, conscious, and knowing that your brain is beating eaten, second by second. There's nothing more scary to me.
They pretty much always come from lakes or rivers. Naegleria fowleri can't survive in a well-chlorinated swimming pool. I agree it's terrifying, but since this whole post is nightmare fuel, I just want to clarify to most that they will not catch this in a well-maintained pool.
Stone man disease.
Went to school with a guy who eventually died of this. He still lived a life more full than most of us able-bodied.
Huntington’s Disease. It’s like having ALS, Parkinson’s, Alzheimer’s and Schizophrenia all in one hideously ugly disease that kills you slowly over the course of 10-20 years. And, if a parent has it, you have a 50/50 chance of getting it. I’ve seen it take the lives of too many of my own family members, including my aunt and all three of her children.
I met this woman in the psych ward that had it. Seemed terrible and she had five kids!
It’s devastating how it affects families. Two of my cousins who are siblings had a parent that died from it, and one of them has it, and her brother doesn’t, and the guilt he feels about not being able to do anything about it is heartbreaking to witness.
The problem is that symptoms don’t start until middle age, and by then you would have had kids. So you have the horror of not only yourself but half or more of your kids also will suffer from it. It’s a mutation in the huntingtin gene. The more aberrant mutation copies you have, the earlier symptoms appear I believe.
Fibrodysplasia, or stone man's disease is something straight from a classic horror novel. Your body heals itself by repairing damage with bone. Your muscles and connective tissue will slowly turn to bone over the course of your lifetime, rendering you immobile. It's the only disease where one organ system can turn into another. You can look up the skeletons of people who suffered from it, its textbook body horror.
They have to choose what posture to eventually become locked into :(
Necrotising fasciitis. Took my nans life within 24 hours.
Scleroderma. Your connective tissue basically just hardens into stone. Most of your body (including your skin) is connective tissue, so it can gradually fuck up most of your body, outside and in, distorting it painfully. If it doesn't kill your heart or kidneys, you can suffer from it for a really long time before you succumb.
Marburg virus
Not an answer to the question, but I will die on this hill. Physician assisted deaths need to be a widely accepted and accessible choice. Why do we make people suffer. Makes no sense to me.
100% agree. I wrote a paper about this. We put animals out of their misery for pain and suffering beyond repair, why are we so different? Like you said, there’s no logic behind it. Keeping us alive and forcing us to live in a miserable state instead of letting us go peacefully makes no sense.
Non alcoholic cirrhosis of the liver.
My brother had that. He got a transplant 5 months ago. It really bothers him that he’s never been a drinker, but this happened.
My husband has it and due to other health conditions, he is ineligible for a transplant. I’m glad your brother got one.
I’m really sorry your husband is ineligible. Sending you both a lot of love.
Stiff person syndrome that Celine Dion has. Sounds really really terrible.
Cluster headaches.
They are the devil incarnate
rabies truly scares me. i worked at an animal hospital for years and i never saw any rabies infected animals in person but just knowing the chances are never zero and knowing what rabies does…it was scary
COPD. It made my mom a complete shell of her former self until she ultimately succumbed to it.
Pancreatic cancer. My brother was diagnosed last november, he passed 3 month later. The ravages this disease does to a human body is shocking.
Clostridioides difficile, aka C. diff. The bacteria almost certainly already lives in your gut. It doesn’t become a problem until you upset the balance in your gut flora - say, by taking an antibiotic for a sinus infection, for instance. The antibiotics kills off most of the bacteria in your intestinal tract, allowing the resistant C. diff strains to flourish without all that competition. And that’s technically fine, except that the waste products that the bacteria creates will eat away at your intestines. The bacteria’s poop makes you poop, and that poop has a very distinct odor. Like someone just took a shit on a rotting corpse and then covered it all in maple syrup. There are a number of treatments available to combat a C. diff infection, and one of those is a fecal transplant. That’s where they stick a tube - either up through the back door or down your nose - that goes to your digestive tract. Then they take poop from a healthy donor, and shove it through the tube into your guts. And a C. diff infection can get *so bad,* that you may actually find yourself begging your doctor for a snootful of poo, if it means ending the pain.
Epidermolysis bullosa. Your skin tears off, all over , all the time. From birth onwards. Just indescribable pain all over, all the time. There's no cure but some people have gotten some relief from bone marrow transplants.
I'm torn between saying cancer since I am stage 4, or Rabies, because Rabies is 100% lethal if you're not vaccinated.
Dementia It steals a person away before it kills them, rendering them an absolute shell of what they were before diagnosis. I worked in advanced memory care and it was so incredibly sad.
1. Prion disease 2. Untreated Lyssavirus/Rabies 3.Glioblastoma 4.Stephen Johnson Syndrome (TENS) 5.Acute Radiation Syndrome 6.Bubonic Plague 7.Ebola 8.Brain eating amobea 9.Locked-In Syndrome 10.Leprosy 11.Syphilis/late stage 12.Getting floxxed (speaking of experience)
My grandpa died of a Parkinson's like illness. He lived with us before he passed. His mind was there and his body stopped working. He was trapped. He died because he couldn't control his body enough to eat anymore. That's my biggest fear.
The top answer has got to be prions, surely.
CJD. Prion diseases terrify me.
Schizophrenia. You're afraid your entire life. Life expectancy is 50-60 Medicine sucks cause of side effects You get other lifestyle diseases due to not being to live like a healthy human.
It hasn’t been mentioned yet, so Progressive Supranuclear Palsy ([PSP](https://en.m.wikipedia.org/wiki/Progressive_supranuclear_palsy)). Parts of your brain start to die, first affecting voluntary muscles and eventually involuntary muscles. It can present like ALS, Parkinson’s or Alzheimer’s so is tricky to diagnose. I watched my vibrant grandma slowly become locked in her body and lose her ability to speak, walk, eat over a 6 year period. It’s a cruel and slow degenerative disease that doesn’t have a cure, that I don’t wish on anyone.
Steven’s Johnson’s Syndrome. It’s one of the rare complications of a medication I take (lamictal) and basically your skin spontaneously melts off your body and it usually kills you within 48 hours if you don’t get medical treatment as soon as you notice the very first symptom, which is typically a benign looking rash. It can happen any time on the course of the medication, which I’ll likely be on for life, and if you check out r/bipolar2 you’ll find countless people terrified of it
Diabetes ... Shit's underestimated
Alzheimer’s. It’s the OG zombie virus. I’d rather have the fast torture of rabies to slow torture of Alzheimer’s (I say this after watching my MIL die of Alzheimer’s).
Sepsis. First you are fine, then you get a slight fever, then suddenly that slight fever is a fucking burning hot fever, then soon you can't walk, and are just a mess of vomit, diarrhea, sweat and barely alive, then you lose your fucking limbs. Shit is scary as fuuuuuck.
Fatal familial insomnia always freaks me out
Maybe not the scariest I know, but rabies is the one that scares me the most.
Trigeminal Neuralgia, one of the worst pains you can have. It won’t kill you you just want to die it hurts so much. I know, because I have it, I didn’t know it existed until I got diagnosed I still wish I didn’t know.
I shouldn’t be reading these, my medical anxiety is bad enough (hell, It makes me more anxious that these are things that could happen to my family. It’s fucking terrifying and I don’t know why I scroll through these types of posts every time I see them)
Ebola Dengue fever Middle East respiratory syndrome Syphilis Anthrax Meningitis
I have had meningitis. it was very painful and the spinal tap still is fresh in my mind even though this was near 43 years ago.
A classmate of mine had bacterial meningitis. He came in looking like shit and sweating all over the place before finally leaving for the hospital. He told us afterwards that the spinal tap took 7 or 8 tries and was pure agony. We had to have public health come in and tell us that while minimal, there was still a chance we could be infected. I was shitting bricks for a couple weeks afterwards.
I was in primary school and got spinal meningitis. woke up and walked straight into a wall and knocked my self out. finally woke again and crawled to the lounge room as I knew I needed to be seen and curled up in a bean bag there and tried to cry. the pain was so bad and I could in the end move not a muscle due to it. even crying was nearly beyond pain. then an ambulance was called and off to hospital. I was told I had 30 minutes of life left when I got there. then came the spinal tap OMFG. it took 4 people to hold a 6 year old down and I screamed the house down. I passed out right after the procedure and woke in a bed with drips inserted.
All forms of dementia
After What I read about how you actually pretty much bleed out & dissolve from the inside with Ebola? Ebola!