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zozo131

484d

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?

Top reply
    • zozo131

      164d

      @Zel7 yes! This is what a lot of doctors don’t understand - the physio/pt actually causes more pain and they just say “well, just deal with it and it will get better” but it’s a CHRONIC illness??? Meaning constant???

    • hello.its.me

      192d

      It depends who you see and what type they think you have. I've had hEDS suspected for a while and they said there wasn't much point as the treatment wouldn't be different to what I'm getting at the moment. But as my symptoms worsened and there's the possibility of other types i got angry with them and now they are sending me for genetic testing in London. You just have to keep fighting against them when they ignore you. Bring your own research with you if you have to!

    • lola_

      477d

      lyme disease is kind of treated like this... some people believe in it, others don't but most of the doctors are confused af. sounds like eds is heading in that direction, yikes.

    • Crafty

      481d

      I'm pretty sure they will continue to diagnose people as having a hypermobility spectrum disorder, or genetically testable EDS. The diagnostic problems are mostly to do with the hypermobile form of EDS, formally type 3. There are two issues. Firstly the reluctance to diagnose children due to kids being more hypermobile and many not going on to develop the chronic pain or other comorbidities, (my daughter's paediatric Rheumatologist says that currently the clinic sees greater than 1:500 of kids in our area who are definitely hypermobile) and secondly the possible removal of the diagnostic criteria toolkit. Because there is such difficulty in differentiating between hEDS and HSD, some specialists are now suggesting treating it as the same disorder. I don't really understand why they can't still link it with the other types of EDS but it is the name that may change. If so, this will be the 4th change of "diagnosis" that I personally have been given for exactly the same genetic condition, which I can now trace back 3 or 4 generations. My daughter's last official diagnosis said "working towards a diagnosis of hEDS" which will supposedly be confirmed now she is 16. The joke being its obviously a genetic condition she inherited from me, and therefore will be the same condition, but even then, they don't want to officially label it. It makes no difference to treatment. She is still seen by a multidisciplinary team regularly to try to rehabilitate her, so it's not likely anyone will get different treatment. Finally (sorry) there are still some old school rheumatologists who don't accept that hypermobility is anything other than a good thing. If you get one of those, all I can suggest is beg your GP to refer you to someone else.

    • the.misguided.girl

      483d

      Fellow UK person here. It disheartens me to hear this, especially when I am fighting for a diagnosis but at the same time it doesn't surprise me. I say this because I had a friend who told me they prefer not to diagnose as it's currently classed as a rare genetic disorder which means they get more funding for research so the more people they diagnose the less rare it is

      • the.misguided.girl

        483d

        @the.misguided.girl Which then means they get less funding for research. How true this I don't know, however it would explain them stopping diagnosis

        • zozo131

          482d

          @the.misguided.girl it’s so upsetting!! My niece is only 4 bless her and to think there’s going to be so many kids that are going to be in pain and fatigued without knowing why is heartbreaking 💔

    • Laulharbeau

      484d

      I read a few articles online saying it can take 10 years to get diagnosed with EDS… and thought that was bad enough.. but surely they can’t just cancel people’s diagnosis?! What a world we live in !!!

      • Zel7

        165d

        @Laulharbeau It took me 13 years and a ton gaslighting and being accused of being a hypochondriac until I finally found EDS after my sister met someone with the diagnosis and connected the dots to my symptoms. Then it took multiple referrals and a long wait for the only geneticist in my region to get seen and diagnosed. Now as my condition worsens, all they say is PT, which causes me more pain.

        • zozo131

          164d

          @Zel7 yes! This is what a lot of doctors don’t understand - the physio/pt actually causes more pain and they just say “well, just deal with it and it will get better” but it’s a CHRONIC illness??? Meaning constant???

      • livindead

        484d

        @Laulharbeau It took my nearly 3 years to get a clinical diagnosis (in Australia) and I can't currently get a genetic test bc of cost but the diagnosis I have is good enough for dr s to take me seriously and for me to receive personalised care (meds/physio) and I thought that was bad enough, but 10 years! That's insane and a lot of people are missing out on care and help bc of this....

        • consciousitalics

          483d

          @livindead Hey I'm in Australia and have been trying to get diagnosed but can't find any way of doing it. Can I ask how you got the diagnosis? Was it through your GP?

      • zozo131

        484d

        @Laulharbeau I know! It’s dreadful, I’m thinking of all the poor kids that are gonna suffer not knowing why now. They asked me what I scored on the test and when I said that I was diagnosed before the scoring system, they sort of rolled their eyes 🥺

    • LaurenRomero

      484d

      I was diagnosed as a baby and as becoming adult I have more and more health issues that evolves around ehlers

☝ 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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One user mentioned that they were told years ago in the UK, "we don't call hypermobility EDS anymore." However, this information may not be accurate as doctors' knowledge about EDS or HSDs can vary. It is recommended to consult a geneticist or rheumatologist who specializes in hypermobility disorders for a proper diagnosis and understanding of the situation.

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