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zozo131

Updated 10mo ago

Concerns about Ehlers-Danlos diagnosis in the UK

So apparently, in the UK, they’re not diagnosing Ehlers - Danlos anymore?? My niece went and had an assessment today and we were told that by next year they’re not going to officially diagnose people anymore!! I think it’s heartbreaking if it’s true so could anyone shed some light on this?? Also, has anyone had Ehlers Danlos and it developed into a different type over time?

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CynWecandothis

1y

I haven’t heard that in the U.S. In fact, the geneticist who diagnosed me told me there is research happening on the heds type because it’s the only type that can’t be definitively determined by genetic testing. He expects that more research will bear out more types of EDS as we understand more about heds.
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zozo131

1y

oh that’s good! Might just be the UK 💕
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suspiciouscomrade

1y

I was told the same years ago in the UK. Specifically I was told "we don't call hypermobility EDS anymore". Its bullshit. Doctors in general don't have a clue about EDS or HSDs and will just lie to your face because they think you're mad. Who was your niece assessed by? I gave up on being diagnosed by the NHS after years of obvious EDS and comorbid symptoms because they were incapable of putting multi disciplinary illness together. A geneticist or rheumatologist who specialises in hypermobility disorders is really your best shot of finding out if this is what is causing your nieces problems. I'm so sorry about the experience you've had I really empathise with it been there
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Bijoux_bean22

1y

I am so sorry to hear that you guys are struggling with this. I was dx’d by a geneticist here in the US. I have Hypermobile type so it was a dx of elimination. (They test for all the others, then send you an email saying you have heds) Also, EDS cannot develop into another type unless you have the genes for both types (heds and veds for example) it’s super rare but not impossible as far as I know. I truly hope this helps and good luck getting dx’d if that is what you are looking for.
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zozo131

1y

oh perfect thank you!! I might have to go back to my doctor then and ask her if she can test me for different things
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Student_girl

1y

In the US it’s definetly still being diagnosed and researched. I was diagnosed several years ago and have doctors who are somewhat involved with/up to date on the research which is a huge help
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zozo131

1y

omg lucky!! In my experience, the GPs know little to nothing about the condition 😥

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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