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Seeking Advice on Pursuing Ehlers Danlos Diagnosis

Pluto322

471d

hiya! does anyone know how i can persue my ehlors danlos diagnosis?

1

5

5

Chronic Pain

Ehlers-Danlos Syndrome (EDS)

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Top reply
    • Vievie

      469d

      Not sure if you’re UK or elsewhere, but in the UK you just have your rheumatologist diagnose you from high markers of connective tissue in blood tests and a physical exam :) Elsewhere you might get genetic testing, but i know there’s not testing for hyper mobile EDS yet (the most common type)

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    • Vievie

      469d

      Not sure if you’re UK or elsewhere, but in the UK you just have your rheumatologist diagnose you from high markers of connective tissue in blood tests and a physical exam :) Elsewhere you might get genetic testing, but i know there’s not testing for hyper mobile EDS yet (the most common type)

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      Reply
    • Alfubet

      471d

      Invitae.com You can start here, they have a test for all but one type of EDS.

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    • perpetually_bored

      471d

      The path to getting a diagnosis is not easy even if you have proof that it runs in your family. I spent years being told I was crazy for the pain I felt. Best bet is to be upfront about suspensions and see a specialist in genetic disorders they will at least be familiar enough to recognize the symptoms in you and come up with a treatment plan

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      • Pluto322

        471d

        @perpetually_bored how do i find a genetic specialist? Do i just search on google?/genq

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        Reply
        • perpetually_bored

          467d

          @Pluto322 if you have insurance search on your insurance website or call the insurance to find providers. If not than yeah Google within your area

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☝ 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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