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Pluto322

Updated 10mo ago

Seeking Advice on Pursuing Ehlers Danlos Diagnosis

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

Can you help? connect today

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perpetually_bored

1y

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

1y

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

1y

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

1y

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)

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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