Diagnosing Hypermobility Spectrum Disorder: What to Expect

After being diagnosed with hypermobility syndrome/ a hypermobility spectrum disorder, how long did it take to then receive a more specific diagnosis? (EDS, hEDS, etc.) I was recently referred to a geneticist after my rheumatologist determined that my joint pain/ damage was due to hypermobility. I meet all of the diagnostic criteria for hEDS (as does my mother), but I’m finding it hard to know if another diagnosis is needed/ what next steps should be.

Your answer

crustycrustacean

7mo ago

I'm in Colorado. My Dr. Informs me that the only geneticist in the state that will test for EDS is in Denver. I'm on the 12 month waiting list... I keep looking but can't find any other options.

Fish.loves.cats

2y ago

It's hard to be diagnosed with heds because there isn't a test yet. I heard one might come out this year

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