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

submitted 2 years 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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[-] smoldragon 3 points 2 years ago

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.

this post was submitted on 28 Jun 2023

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