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Joe 🔜 Spoonfest 🔜 WHY2025

Hello 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 💖

Not to be a dick when I’m asking for help but if you’re going to reply to suggest I add a hashtag, please a) suggest a hashtag that has any toots on it whatsoever and b) has anything to do with the condition in question.

This got a lot more boosts than I expected! And has turned up a couple of people. Thanks so much everyone

@joenash I hope you get some information. Best of luck.

@joenash happy to boost, but also ...try editing to add some hashtags? Best wishes from a mom of a visually impaired son!

@mtechman I was right up on the character limit unfortunately! But thank you for the recommendation, good reminder for me to go searching hashtags and see if I can find some folks.

@joenash Never heard of it, but I'm boosting your request. Best of luck!

@joenash Good luck. I suggest using hashtag for your condition to boost visibility.

@Petermid ik ken ze niet! Ik mis vaak Nederlandse organisaties omdat mijn slechte Nederlands. Vinden ze “macular dystrophy” belangrijk, of alleen “macular degeneration”?

@joenash Mainly but not only macula degeneration as far as I know. They have a “lotgenoten-contact” information channel. You could give it a try.

Their website says: (translated) For questions about macular degeneration, eye injections, contact with fellow sufferers, aids, etc., you can contact the Macula Info Line.
Per e-mail: info@maculavereniging.nl
Telefonisch: 030-298 07 07

@j_g_fitzgerald as far as I can see (from the Big Hashtag Search), there are no posts on that hashtag. Are you seeing otherwise?

@joenash No. This is how you get started. Now people can find your messages using that hashtag.

@j_g_fitzgerald right, thanks, that’s not what I’m looking for. Please kindly stop suggesting it

@joenash I obviously misunderstood your message. I thought you're trying to reach people who might help. Sorry for trying to help.

@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.

@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