EDS/connective tissue disorders....bay area resources

[humanrising]

Wondering if anyone has seen anyone they would recommend for EDS diagnosis or connective tissue disorder diagnosis in the bay area?
would really love to have this either ruled out or in. thanks so much!!!!!!!!!

 

[Zebra]

Hi, @humanrising!

I see that your post got zero responses. That's always disappointing.

Did you find an EDS specialist your own?

I, too, would like to know of an EDS/inherited connective tissue disease specialist in the SF Bay Area, or at this point, anywhere in Northern California would be great.

Any chance, anyone on PR knows of someone?

I've done my due diligence. There are zero experts at UCSF or Stanford (although Stanford does have experts in Marfan Syndrome).

The EDS Society's list of recommended "providers" contains a lot of folks who are not medical doctors, such as chiropractors, physical therapists, etc., which are invaluable resources, I'm sure, but not appropriate for a definitive diagnosis.

Any assistance that anyone could provide would be greatly appreciated!

Thank you!
Z

 

[JenB]

The folks at the Center for Complex Diseases are not EDS experts but they are EDS aware: https://www.centerforcomplexdiseases.com/

For a formal diagnosis, you would need to see a medical geneticist.