Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)
Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.
So there are some risks of hEDS that are worth having checked out/knowing if you have them. When I was evaluated my doctor concluded I had HSD, not hEDS, but ordered an echo of my heart to make sure there was nothing wrong with my aorta. It’s definitely important to know if there’s any vascular involvement.




















