Struggling with hEDS Diagnosis: How Long Did It Take You?

If you think you have it go to a geneticist who specializes in it then it’s a blood test for all the Eds and a physical eval for hEds . But if you don’t specify go and say you want the tests it could be years and years so go get the tests done

6 years and a lot of pushing to get my drs to put it on paper

10 years of random illness. About one year after a doctor recognized it and sent me to a specialist.

Dislocations started age 7, diagnosed at 15 😅

AraS. That gives me hope

Once I was sent to a geneticist, he diagnosed me in five minutes.

I’ll tell you when I get there. I have a fibro diagnosis (took 4 years to get) and now, 3 years later, my chiropractor just told me that she is almost certain I have it. Luckily the pain doctor I’ve been waiting for an appointment with for over a year and see in April is the same person she recommended I see for a diagnosis. Fingers crossed it works out!

From first hearing of it 3years and 4 doctors took a genetics doctor to get my eds diagnoses