JoeHello fediverse, lil cry for help: I’m looking to speak to someone with vitelliform macular dystrophy caused vision loss, so I can ask about their experience with the onset of symptoms. I was diagnosed ~3 years ago and until recently hadn’t experienced symptoms, I believe I now am but would love to chat to others about their experiences. Compulsory masto disclaimer: I’m not looking for advice other than the specific ask above, thank you. Boosts much appreciated 💖
Hasufin@joenash I do not know anyone personally, but there's a voice actor who makes Youtube videos, goes by Blind Surfer; his name is Pete Gustin. I *think* that may be the issue which he has. He talks about his experiences a fair bit; even if he's not really available to talk his videos could be useful to you.
@Hasufin his is macular degeneration, but thank you!
@joenash Dangit, I should have known that. I recalled the description but not the name, and it seemed similar to the description of your diagnosis.
At any rate, I hope it helps; more importantly I wish you the best of luck in dealing with this condition.
At any rate, I hope it helps; more importantly I wish you the best of luck in dealing with this condition.
@Hasufin it’s a very similar name, to be fair! And my condition is very specific…even within “vitelliform macular dystrophy” I turn out to have the weird variant, because ofc I do. Either way I wasn’t aware of blind surfer, so thanks for the channel rec!
@joenash Having a rare condition sucks. You end up having to educate your doctors about the issue, the treatment protocols are virtually nonexistent, and all the insurance forms and whatnot as just ¯\_(ツ)_/¯
@Hasufin fortunately in my case, a researcher focused on my specific condition works at my local hospital! It was a lot of referral hopping to get in front of him but not as much agg as it could have been