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769d
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.
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Hypermobility Syndromes
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131d
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.
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754d
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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