Ehlers-Danlos syndrome

Andi66
Andi66 Championing
in Rare, invisible, & undiagnosed conditions

Does anyone suffer with this condition ? I was diagnosed in 2023 with hypermobility syndrome disorder which is part of this, but I also have the other conditions attached, so Eds. My doctor referring me back to the rheumatologist. But it's not just the painful joints. It's the digestive tract that is a nightmare. Similar to Ibs. Constipation, then running back and forth to the loo. If I go out which isn't a lot taking anti diarrhoea tablets, which in turn not great. Just wondering if anyone has this and how they deal with it

Comments

  • shaan200
    shaan200 Listener
    https://forum.scope.org.uk/discussion/148189/ehlers-danlos-syndrome

    I have eds as well as a lot of other things. EDS has many other related conditions. However, if I am understanding you you're not formally diagnosed with hEDS? It will be a bit difficult for any support with the HSD label soley on the NHS, even rheumatology can decline referrals. I'd try to speak to your GP about that. But also HSD can have many related conditions too.

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