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Mine was activated in 2021 ....I was 68. I moved recently and the new Dr seems to doubt my journey so, now I'm back to square one.

For example, were you diagnosed with a specific type of #EhlersDanlosSyndrome (EDS), a #hypermobilityspectrumdisorder (HSD), or were you initially told you had joint hypermobility without a diagnosis of EDS or HSD? Has your diagnosis changed or become more specific over time?

I was diagnosed with migraine, fibromyalgia, and did not receive my hEDS diagnosis until age 47. I was never diagnosed with hypermobility-no one ever looked. It wasn’t until I met someone with EDS that I realized we had so much in common and I pushed my providers for more.

Diagnosed at age 66 after Long Covid really brought it to light. Dr. used the current criteria, but gave me diagnosis of the older term of Joint Hypermobility. I've translated it to Generalized HSD.

Answering for a friend. It is too long for here but it took over a decade. Drs kept looking for horses, then zebras, finally a unicorn (23 iterations). they are not good at what they do, much damage was caused by misdiagnosis. Final diagnosis was hEds with a list of comorbiditities that runs too…