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170d

got told by a doctor I most likely have hEDS but that there wasn't treatment options in my area so he wouldn't diagnose me. sought a different opinion and that doctor said I have to see a specialist in London for genetic testing to be diagnosed despite there not being a known genes for hEDS. Do I just go along with the referral and hope the specialist will sort it all out?

    • Doglover25006

      170d

      I agree genetic testing is a good idea if you can do it. I have an hEDS diagnosis because nothing showed up on my genetic testing to indicate another subtype. However please keep in mind more genes that play a role in EDS are still being discovered for all subtypes. Due to the emergence of new symptoms since my genetic testing 2 years ago my hematologist is concerned I may have vascular EDS not hypermobile. My genetics doc (I’m in the US and my doc was in Florida at university of Miami genetics) recommended I be retested every 5 years as medical research into EDS and genetics as well as technology for genetic testing evolves.

      • hello.its.me

        168d

        @Doglover25006 thanks for this! I'm going ahead with it after being more informed. They think if they find anything itll.most likely be cEDS or clEDS, but if i have the same outcome as you, I'll definitely asked to be retested on a regular schedule! Fingers crossed they find something that helps you best!

☝ 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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Based on the replies, it is suggested to advocate for yourself and seek a geneticist who can diagnose hEDS. Despite there not being known genes for hEDS, genetic testing might be done to rule out other conditions. It's also recommended to bring someone with you or ask the clinic for a patient advocate. However, finding a specialist that works with hEDS can be challenging.

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