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hello.its.me

Updated 8mo ago

Seeking hEDS Diagnosis: Should I Trust the Specialist?

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?

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Doglover25006

9mo

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.
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hello.its.me

8mo

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!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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