who here /rare disease/ ?
just found out i have hemifacial spasms and im only in my early 20's.
> The incidence of hemifacial spasm is approximately 0.8 per 100,000 persons
only cure is invasive surgery where my skull is opened with a .1% chance of death but chance of lots of other complications (hearing loss, face numbness etc). right now it's light twitching almost all day and it spread from my eye to my chin/mouth area. it's only supposed to get worse.
fuck.
>>29180052
I have chronic daily headaches, a mix of tension and migraine ones, 24/7. Been like this since 2012. Not sure how rare it is.
I'm sorry to hear that anon
How badly does it affect your life and when is your surgery?
I have congenital stationary night blindness.
It means my vision drops to near 0 in any sort of dim lighting
Shit sucks, I basically can't leave my house past 8pm
>>29180185
>How badly does it affect your life and when is your surgery?
right now it doesnt affect me too much, no surgery planned. gonna wait a couple months and see if it gets really bad
https://www.youtube.com/watch?v=Y-6AiynrwTw
if i become like that i will definitely schedule a surgery.
>>29180143
Same here anon. Been having headaches daily since I could remember. Glad I have weed though. But I had to take Advil daily when I was a kid for obvious reasons.
My hands twitch/shake if I try to hold them still. My mother has the same thing, but worse. Hers is so bad that she can't even take clear photos on her phone and she spills coffe due to it. My shakes will probably get as bad as hers over time.
Stimulants seem to make it worse
I have polycystic kidney disease. I'm 25 and will be on dialysis before 30. My life span will be reduced and if I can snag a transplant I'll be taking dozens of pills a day to suppress my own immune system, only to delay the inevitable failure of the replacement organ
I've been otherwise healthy and have had good habits my whole life. Nothing is fair
>>29180143
Don't freak out, but mention Chiari Malformation to your doctor. It's rare but very treatable, I know a guy who has it and he turned out okay after surgery
>>29180143
It might be trigeminal neuralgia, in which case you are very fucking fucked. Luck, mate.
>>29180052
I have dermatographism, not sure if thats rare or not but it plagues me and has got years and nothing seems to work on getting rid of it. My only relief is that it has gotten less severe over the years.
>>29181528
And has for years*
Fuck mobile
I have a rare condition of autoimmune disease where my whitattack cells attack some parts of my brain and cause all types of nasty side effects like convulsions.
I take immunosuppressive medication, but is a vicious cycle. One day i'll either grow resistence to it or be attacked by an opportunistic bacteria/virus, so I'll have to change meds or drop them for a while. One day there will be not medicines left for me to emigrate and I'll slowly die as my whitecells devour my brain matter.
>>29180052
reactive arthritis
Rare as fuck
Hmm, so if I understand it's just like an eye twitch? I get sort of spasms I can't control in my left eye sometimes, but I imagine this is a chronic thing? or am I fucked in a few years
>>29181659Sounds like it sucks though to be honest
Goddamn son, godspeed.
genetically inferior races.
That's rough. I had leukemia as a kid. Came back a few times throughout childhood and my teen years. Been gone long enough that I'm officially considered to have beaten it. Cancer is so prevalent in my family that I'm terrified to have kids. Don't want to potentially put them through that.
>>29180052
What's better to collect, rare pepes, rare flags (pol and int) or rare diseases?
https://en.wikipedia.org/wiki/Antiphospholipid_syndrome
This is what I got at 19. I am 23 and am on xarelto for life. AMA
Crohn's, althought it probably isn't that rare.
Look on the bright side, rare disease anons: the world is only getting worse, but since you'll die prematurely you won't be around when things really get bad, and you'll never have to deal with old age.
>>29181143
My grandpa and I have this bad. The only advice I can give is to cut the sugar and check your blood pressure.
>>29182417
Thats rough. There aren't any long term studies on it yet and it's super expensive. Hope you have good coverage.
>>29182496
>mfw don't have a rare disease but am not going to deal with old age anyways
>>29181659
Get AIDS to kill your immune system. Then you live like any other AIDS infected person. At least they don't have to worry about losing their brains.
I'm sorry, but I'm dead serious: I would immediately kill myself if I had literally any semi-serious health issue that was likely to be permanent. I am not gonna drag out a shitty life. Life is already completely pointless.
>>29182379
This entire thread is a testament to antinatalism. I already hate my parents, but if I was born all fucked up, I would probably fucking shoot them and then myself from the rage. Having children is the most selfish fucked up thing anyone can do
>>29182664
but i have to ensure muh bloodline doesn't die out :)
>>29182540
I lose my coverage in three years, but I'm going to probably be dead from drugs or suicide by then. Thanks though!
I have a becker nevus
it sucks
>>29181143
Essential tremor isn't really that rare though, about 1% of the population. I have a mild case of it. Thankfully people don't notice I have it unless I have to hold heavy objects.
