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Hi, my name is triciaLH! EDS III and POTS

triciaLHtriciaLH Member Posts: 1 Listener
I was fascinated by the  advert for Ehlers Danloss III which made me sign up.  Both my two have it but we have no care or support now aged 16 and 18.  My daughter has Pots with it.  We really need a consultants support to explain what is happening and support us but there dont seem to be any and would love a referral.  We are now in west sussex .  Diagnosed by unit in London. Its very tough with no help x  

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @triciaLH   Pleased to  meet you.

    Thank you for joining and sharing.

    Please we have a member of our Community Champions teams who is also a friend of mine.

    @chiarieds has the condition similar to you has exceptional knowledge and expertise.

    Have tagged my friend  now be along shortly not too long.

    Ask any questions .

    Organisation for POTS

    https://www.potsuk.org

    Please if I can help with anything else please contact the community.

    Please take care and safe.

    @thespiceman


    Community Champion
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  • chiariedschiarieds Community champion Posts: 6,897 Disability Gamechanger
    edited March 2020
    Hi @triciaLH - Welcome to the community from me too. As my friend thespiceman says, I have the hypermobile type of Ehlers-Danlos Syndrome (formerly called EDS 111, now known as hEDS). I've passed this on to my children & 3 grandchildren. Ours is associated with Chiari 1 Malformation, which causes neurological problems. My son & I haven't sought a diagnosis, but likely have PoTS too. My son was quite severely affected by this as a teenager & young adult, but has improved as he got older.
    I don't know if you've joined our EDS support group, which is worth looking into. See: https://www.ehlers-danlos.org/
    The GP's toolkit is a useful part of this website, & has further information on PoTS under Emerging major associations. See: https://www.rcgp.org.uk/eds
    When this pandemic situation improves, if you're looking to get a referral for your daughter who additionally has PoTS, I would suggest the Autonomic Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London. See: https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/AUTU/Pages/Home.aspx
    PoTS UK also have a list of Drs with an interest in this. See: https://www.potsuk.org/doctors
    I hope some of this information is useful & do chat here any time. I'm here daily. :)




  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Welcome @triciaLH. I hope the info given above is of some use. Please don't hesitate to jump in and start chatting in our coffee lounge. We're a friendly community and you're more than welcome here. :smile:
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
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