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Struggling with Genetic Testing for hEDS

GreytDood

474d

My doctor doesn't want to do genetic testing for my hEDS, does anyone else have a similar experience?

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Ehlers-Danlos Syndrome (EDS)

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    • Entropyluna

      474d

      They don't know what the genetic markers are for the hypermobile subset of EDS, so there's a good reason that your doctor wouldn't send you for genetic testing if that's the only condition that's being considered. It might be done to rule out other conditions, but it can't prove that you have hEDS.

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    • Entropyluna

      474d

      They don't know what the genetic markers are for the hypermobile subset of EDS, so there's a good reason that your doctor wouldn't send you for genetic testing if that's the only condition that's being considered. It might be done to rule out other conditions, but it can't prove that you have hEDS.

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      • GreytDood

        474d

        @Entropyluna That makes more sense! Thank you! He was just kind of like, "nah we aren't doing it"

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        • Entropyluna

          473d

          @GreytDood if you're looking to get a diagnosis, a rheumatologist would be your best bet. They specialize in joint disorders, but finding one that works with hEDS is easier said than done.

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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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