I am 30F, diagnosed with Spino-cerebellar ataxia 2 weeks ago. This means that I will slowly lose the ability to walk, to control my limbs, my fingers, my speech, etc. and this decay will probably start by the time I'm 40. I'll likely be in a wheel...
My grandma (on my dad's side), my dad, his sister all have SCA-type 1. When my grandma had it, nobody knew what it was. When my dad started showing symptoms in his 40s, they ran a gamut of tests and eventually landed on this. I was around 15 at the time. He started with needing a cane, then a walker, and now is in a wheelchair full-time. He is mentally as sharp as ever, and I can see how frustrating it is for him that his body not to be able to keep up with his mind, and that he's so beholden to people around him for various everyday things. I told my partner before we got really serious that there was a 50% chance that I might have this - I didn't decide to get tested until this year, when we started talking about the kids thing seriously. He has been lovely and incredibly supportive. I got my results back two weeks ago, and I tested positive. The protein sequence repeats that cause this are present in a higher number for me than my dad, so that means that I will likely start showing symptoms sooner and that it will be a little more severe than what my dad's coping with.
I believe it's a fairly rare condition, so I guess I'm hoping to bring some awareness to the whole thing. Also, talking about it I think will be cathartic for me. So, AMA!
Links about SCA:
My proof: I've provided private proof to the mods.