u/TrekKit27

Diagnosis

I have done loads of research, and I based on everything I've seen; I could definitely have Hypermobile EDS or at least HSD. The internet says that since there is no genetic test for hEDS, and a diagnosis is purely clinical, it is important I find someone who is experienced with hEDS. I mean, your regular joe doctor probably won't know what doughy or velvety skin feels like, right? Unfortunately, there isn't anyone near me on the Ehlers Danlos Society website that isn't a physical therapist or a geneticist.

So, is it really that important to find someone that has special knowledge in hEDS? And how on earth would one do that? Could a physical therapist or geneticist diagnose?

Also, how hard was it for your doctor to believe you? Is bringing a thorough joint and medical history necessary so they take you seriously and not try to write it off as something else?

Anything else I should know?

Thanks in advance!

reddit.com
u/TrekKit27 — 4 days ago