How to Get Officially Diagnosed: Seeking Advice

If you suspect hEDS, the Ehlers Danlos Society has diagnostic criteria on their website that is designed to support primary care physicians in diagnosis. I was initially diagnosed this way, and then confirmed through a geneticist. Could be a good place to start.

I was diagnosed by a geneticist. I went on Facebook and found an EDS support group specific to my state. And everyone in there was SUPER helpful with posting reviews of doctors they’d been to. Helped me find just the right one.

My noticable symptoms began with POTS and Dysautonomia. I started with a Cardiologist who referred me to a Neurologist and I finally made it to Geneticist. The Geneticist officially diagnosed me with hEDS. If you are struggling you could start there!

i too am looking for an official diagnosis, unfortunately that had to be put on the back burner as i recently had to have knee surgery (unrelated to my suspected EDS). 3 doctors have shared my suspicions and i am currently seeking a testing site.

I was in the same situation last year, it depends on who the doctors are. If they are joint people just keep pushing for a diagnosis and to be sent to someone with experience if they don't have it. Unfortunately you might have to do the bighton test multiple times. Good luck.

I suggest looking online for a center that has some experience with EDS, maybe with a proper medical geneticist, I think getting a formal workup and diagnosis is worth the drive.

My diagnosis was done by a rheumatologist

I've had genetic testing done through my neurologist. But haven't met with a geneticist. I'll reach out for a referral for that. I do have abnormalities with col6a3 which affects collegen production, but that's not known to be associated with eds at this time. Thank you

i found an integrative med specialist thru a primary who has it herself and helped go thru all the eds evals with me snd i was technically right on the line but she added it to my diagnoses list n

My orthopedic surgeon was the one to start the process of getting diagnosed I’m currently waiting to see a geneticist talk to your pcp about seeing one too they can give you the official diagnosis

I got diagnosed by an orthopedic surgeon