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Archie289

547d

I havent been diagnosed with hEDS but I am suspected to have it and am setting up an appointment to get tested. what can I expect from being tested? what do those of you diagnosed with it wish you knew prior to testing? advice please!

    • Spuds

      547d

      I was diagnosed when I went to get tested for a bleeding disorder, and when that came back negative, the doctor had me answer some questions on how I scar (raised scars) and if I bruise easily and then had me to the skin stretch and then different stretches and concluded that I have hEDS.

    • Kae92

      547d

      There is no genetic test for hEDS. If you get the genetic testing it's basically to rule out the other types... that being said my official diagnosis appointment involved seeing a pain management doctor that specializes in EDS and hypermobility. He basically checked a bunch of stuff and had me stretch in a bunch of different ways. I've watched Izzy Kornblau's videos on YouTube and learned quite a bit since being diagnosed. She has a video of testing criteria

☝ 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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