New here, hi!

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hannahm
hannahm Online Community Member Posts: 1 Listener
in Start here and say hello!
Morning,
I’m new here and have recently been diagnosed with Ehlers-Danlos, PoTS and a VSD in my heart. I’m finding taking in all the info hard, along with the rapid decline in my health lately and isolation that has brought. I’m looking to connect and make some new friends who understand! 

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  • chiarieds
    chiarieds Online Community Member Posts: 17,155 Championing
    Hi @hannahm - Welcome to this very supportive community. I also have Ehlers-Danlos Syndrome (hypermobile type), so do understand. There's quite a few of us here!
    Have you seen 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 EDS affects you, I have found this link may also help, as it gives our GPs an understanding as to how EDS can have further implications, such as PoTS, in our lives: https://www.rcgp.org.uk/eds
    You can have a look around using the 'All groups' link on the right, & join in any discussions, as well as chat here. I look forward to seeing you around.

  • Adrian_Scope
    Adrian_Scope Posts: 11,758 Online Community Programme Lead
    Good morning @hannahm. It sounds like you've got a lot going on at the moment. You're very welcome here and I hope we'll be able to help. Please let us know if there's anything we can do. :smile:
  • Ails
    Ails Online Community Member Posts: 2,237 Championing
    Hi @hannahm and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm really sorry to hear of your health struggles.  You have come to the right place for support and friendship as there are lovely, friendly people on here.  You will make lots of new friends I'm sure and I hope you enjoy your time with us.  If there is anything you need help with then please don't hesitate to ask us.  All the best.  :smile:
  • chiarieds
    chiarieds Online Community Member Posts: 17,155 Championing
    Hi @hannahm - Just to say @veganelle also joined the community recently, who also has Ehlers-Danlos Syndrome, so perhaps may chat with you too.

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