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.
@Mallulady thanks so much!
@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!
@riley thank you!
@joenash Good luck. I suggest using hashtag for your condition to boost visibility.
@joenash
Ken je de Maculavereniging? Die kunnen je wellicht in contact brengen met ervaringsdeskundigen.
https://maculavereniging.nl/
@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
@joenash Hashtag, there you go;
#VitelliformMacularDystrophy
@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
Good luck Joe.
@MacropodCare thanks so much
@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