Yāall, whatās the benefit of getting a hEDS diagnosis? Every Doc Iāve 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 thereās no point in actually getting the diagnosis so they donāt want to do the evaluation. Theyāve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they wonāt even do the in office evaluation whatās 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 Iām not formally diagnosed but Iām 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. Itās definitely important to know if thereās any vascular involvement.














