Concerns about Ehlers-Danlos diagnosis in the UK

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!

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.

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.

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

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 !!!

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