Does anybody else live with a rare disease? (beehaw.org)

submitted 1 year ago by sky@beehaw.org to c/disability@beehaw.org

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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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[-] mobyduck648@beehaw.org 1 points 1 year ago* (last edited 1 year ago)

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.

this post was submitted on 28 Jun 2023

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