Sidechat logo
Download TikTok Instagram X
Sidechat icon
Join communities on Sidechat Download
Chronic Illness icon
Chronic Illness 5w
The other week I had gotten a call that my genetics appointment for hEDS that I was waiting till 2028 had an opening for today, so I went 100+ miles to go and for them to tell me that I had it and there was no reason to test, is it bad I’m disappointed
comment

8
upvote 14 downvote
default user profile icon
Anonymous 5w

on the bright side you can get treatment now!

upvote 6 downvote
default user profile icon
Anonymous 5w

I’m super grateful I got the appointment, but I’m still kinda disappointed for them to just tell me what I already knew.

upvote 4 downvote
default user profile icon
Anonymous replying to -> OP 5w

Yeah I feel similar after mine. I want advice and solutions. I want to be in less pain ever day and to SLEEP.

upvote 5 downvote
default user profile icon
Anonymous replying to -> #1 5w

Same, I’m having such a hard time trying to find a provider that’s willing to try a medication I was recommended in the past, but couldn’t afford at the time :(

upvote 2 downvote
default user profile icon
Anonymous replying to -> #2 5w

I wish, but there isn’t much treatment to it other than pain management and physical therapy, wich I have been doing pretty much since I was a child.

upvote 1 downvote
default user profile icon
Anonymous replying to -> OP 5w

I have clEDS and there are a lot of treatments for symptoms and comorbidities if you find the right doctor :)

upvote 3 downvote
default user profile icon
Anonymous replying to -> #2 5w

Would that be another specialist ? I have so many already and don’t know who else could be of help

upvote 1 downvote
default user profile icon
Anonymous replying to -> OP 5w

Doesn’t have to be another specialist, just someone who’s informed about EDS. I have an EDS specialist that treats me for basically everything and refers me for procedures or treatments he’s not able to provide

upvote 1 downvote