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

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.

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

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 :-(

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

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.