I have a rare muscle condition, to the point where I feel like I have to be careful where I even mention it because it might make me identifiable. It’s pretty lonely sometimes because of the subset of people who have this condition, most of them don’t make it to adulthood and I really don’t have anybody to discuss shared experiences with.
Anybody else here in a similar boat?
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Mine isn’t as rare but I’ve never met anyone else in real life who has it. And for 26 years straight I suffered it and saw multiple specialists, none of which ever even considered or knew about my actual illness. I have cyclic vomiting syndrome.
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Not the same level of rare, but my main condition is diagnosed as “connective tissue disease - unspecified”. I’ve only ever met one other person with this diagnosis.
My wife has hashimotos which is not that rare but I honestly think there is something more to it. She has had issues with all her limbs and tumors and it makes me think her system is fighting itself more than just in the thyroid.
I have visual snow syndrome, it’s a migraine-adjacent disorder that wasn’t really studied until a few years ago. It’s so-called because it makes your vision look like a snowy old-fashioned TV but it also screws with your perception more generally causing tinnitus, light sensitivity, derealisation, and in my case a 24/7 headache nothing short of cannabis will get rid of!
It was barely known to neurology when I got it but I was eventually diagnosed by a migraine specialist.
Not a disability, but I had/have a 1 in 200k autoimmune cancer typically found in children discovered when I was turning 30.
