Seeking advice on possible hEDS diagnosis

I'm on a genetics wait list and they said it's like 3 years wait to see him, even tho 3 doctors have referred me for suspect EDS. I hope you get results soon.

How do you find a geneticist to? Is that different from a diagnostician?

hi! best of luck with ur geneticist appointment :-) i’m not diagnosed w hEDS but i did go through the testing for it! my rhemy rlly suspected i had some form of EDS (she thought hEDS), geneticist thought cEDS but my genetic test came back normal with some more digging i ended up being diagnosed w an unspecified autoimmune connective tissue disorder. i have a lot of similar symptoms & co-morbidities w EDS tho ! sorry i feel like i’m rambling but ur welcome to message me if you’d like! going through the diagnostic phase can be really difficult :-(

I’m starting the genetic testing process next week. Would love to keep in touch and updated ❤️ I have pots too along with a long list of others

It took me 19 years. Pain my whole life. Wrongly diagnosed at 12. I was diagnosed by a genetics doctor. My first visit she said I did not meet criteria by one item. I had been working hard for years to get well. She ran the tesing anyway, and I was diagnosed when the testing came back a month later.

It was hard for me to get diagnosed, but that was partially because the signs were missed for so long. Once I saw a specialist, I was diagnosed within my first visit (I had already ruled other things out and did genetic testing) You’re welcome to message me