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madd94

714d

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.

    • crustycrustacean

      76d

      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

      699d

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

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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