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I have been diagnosed with Ehlers-Danlos Syndrome and PoTS

Discussion in 'Physical & Sexual Health' started by xfemmelesbian, Dec 9, 2023.

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  1. xfemmelesbian

    xfemmelesbian
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    Hi everyone,

    I just felt like sharing this news because it’s a big thing to me. I had an appointment with a hypermobility specialist this week and was subsequently diagnosed with Ehlers-Danlos Syndrome which is a rare genetic connective tissue disorder. I was also diagnosed with PoTS (Postural Orthostatic Tachycardia Syndrome) which is common with my subtype of EDS. I have been referred to other specialists for conditions I have that are also common with EDS and for specialists splints and braces to be made for my joints. My Beighton Score is 9/9 which is what they use to test for generalised joint hypermobility but any joint can be hypermobile which many of mine are; you need a score of 5/9 to be classed as clinically hypermobile.

    Sadly there is no cure for EDS but i’m just happy to know it isn’t all in my head and my symptoms are real.

    I was just wondering if there is anybody else who has one of the Ehlers-Danlos Syndromes or a related condition. Or even PoTS because it would be great to meet people in a similar situation!
     
    #1 xfemmelesbian, Dec 9, 2023
  2. JT1999

    JT1999
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    Sorry I don't have anything helpful to add, but I hope you are taking care of yourself and have a good support network.
     
    #2 JT1999, Dec 11, 2023
  3. Tiago GA

    Tiago GA
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    Uhmn. Well, I don't know what any of that stuff is, but I have Crohn's Disease. Its a stomach disease, very rare, and there is no known cure - but we can be friends, and see if we have any other common interests?

    Please take care of yourself though!
     
    #3 Tiago GA, Dec 11, 2023
  4. Rayland

    Rayland
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    Thank you for sharing. It's a big step to open up about your worries. There are support groups online, where you could turn to to seek support, as well as talking to a therapist might be benefitial.

    While I don't have EDS. I do have a friend online who also have an EDS and have learned about it, because of them. I do have resources what I can share. There is also some YouTubers with EDS too, who raise awareness about it. If you ever need any advice, then my PM's are open.
     
    #4 Rayland, Dec 15, 2023
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