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Hi, my name is veganelle!

veganelleveganelle Member Posts: 1 Listener
I am recently diagnosed with hEDS and feeling a little overwhelmed by the diagnosis, illness and the term 'disability' xx


  • chiariedschiarieds Community champion Posts: 6,897 Disability Gamechanger
    Hi @veganelle - Welcome to this both helpful & supportive community. I also have hEDS, so have a little understanding. We're all affected differently, & strange to say, I don't consider myself 'disabled' ( altho' my ability has been compromised); just someone who happens to have hEDS.
    Might I suggest you look at our UK's EDS website: https://www.ehlers-danlos.org/ which has local support groups too. See: https://www.ehlers-danlos.org/support/support-groups/
    Depending about how hEDS affects you, I have found this link may also help, as it gives our GPs an understanding as to how hEDS can have further implications in our lives: https://www.rcgp.org.uk/eds
    If I can help further, I will do my best to do so.

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Hi @veganelle. You're really welcome here! :smile:
    I hope the resources Chiarieds has shared will be of some use, but if you have any questions at all, please don't hesitate to ask. In the meantime, you're more than welcome to jump in and start chatting. We're a friendly bunch and it's great to have you with us.
    Senior Community Partner

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @veganelle and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  How are you today?  I hope you enjoy your time with us.  You will receive lots of support and friendship on here.  I look forward to seeing you on the forum anyway.  If there is anything you need help with meantime then please don't hesitate to ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiariedschiarieds Community champion Posts: 6,897 Disability Gamechanger
    Hi @veganelle - I've mentioned to @hannahm that you've both joined recently, & also have EDS, so perhaps may chat, & compare notes!
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