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Concerns about Ehlers-Danlos diagnosis in the UK

zozo131

406d

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?

2

12

12

Ehlers-Danlos Syndrome (EDS)

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    • Student_girl

      343d

      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

        343d

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

        0

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        • Student_girl

          343d

          @zozo131 it’s not my GP, it’s some specialists. I also have POTS and gastroparesis. My GI is really great, and so is my neurologist. It takes a lot of searching and pushing to find docs who understand this stuff, but keep going. It’s worth it.

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    • Bijoux_bean22

      343d

      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

        343d

        @Bijoux_bean22 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

        1

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    • suspiciouscomrade

      354d

      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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    • CynWecandothis

      356d

      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

        355d

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

        1

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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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I cannot confirm the information about the UK not diagnosing Ehlers-Danlos Syndrome anymore, as there is no provided context on this topic. However, regarding the development of Ehlers-Danlos into a different type over time, it's important to consult with a medical professional for accurate information and diagnosis.

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