Which doctors do you see?

I see a geneticist as needed (1-2 times every year or so). I have a really close established relationship with my primary care provider, who has taken the time to listen and learn about my condition. I also see neuro, endocrinology, pain management, and various ortho specialists.

I too actually have PCP who has h EDS ‘ she is great! Helps me so much. I moved to OK from Houston, big change. I have 15 Dr’s here! 4 orthopedics because they all do something different. Hands, knee, back, neck, etc. it’s ridiculous. I keep a notebook to track them. The least helpful Dr is my Rheumatoid but I love her nurse practitioner. Just use her. But otherwise my Dr’s are great & understanding. But I advocate pretty strongly for myself. You have too to get anywhere! I have been doing this for 16 yrs though.

For my h-EDS, I see a family practitioner who just happens to be an EDS expert. His daughter has EDS so he decided to learn as much as he could (still learning and is up to date with the latest treatments and such) so he could give support and treatment to the local EDS community. It’s unconventional for a PCP/GP to be a “specialist” but he filled a gap that wasn’t being filled by rheumatologists, neurologists or any other doctors b/c many refuse to treat EDS, or say it’s “untreatable”.

Where are you located? I live in Boston and see a bunch here.

I see a ton of doctors, but I see Fran Kendall here in Georgia for my EDS diagnosis.