I have classical ehlers-danlos syndrome and am a full time chair user. — Scope | Disability forum
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I have classical ehlers-danlos syndrome and am a full time chair user.

peachpit
peachpit Member Posts: 1 Listener
edited December 2019 in Disability rights and campaigning
Hello, my name is Alice and I have classical ehlers-danlos syndrome and am a full time chair user. I’m looking forward to finding a community with everyone
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Comments

  • TwistedSista
    TwistedSista Member Posts: 6 Connected
    Hi Alice,my name is Lynne and I also use a chair at the moment due to losing my left leg below the knee,my prosthetic isn’t suitable at present so I’m back to my chair for now,the amount of times I’ve crashed into doors and walls is unbelievable,it’s a good thing my bungalow is sturdy ??It’s very nice to meet you and wishing you a Merry Christmas from myself and my family ?☃️❄️??
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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Welcome to the community @peachpit! How has your weekend been? Hope you're keeping warm! :)
    Disability Gamechanger - 2019
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  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @peachpit - Welcome to the community, Alice. I'm just joining in as someone who has the hypermobile type of Ehlers-Danlos Syndrome. The founder of our UK EDS Support group also had the classical type, whom I was fortunate to meet as she lived near me. Sadly she has since retired, & moved to be near her daughter & grandchildren.
    Have you joined the EDS Support group? It may prove helpful, & they also have many regional support groups too. Here's a link: https://www.ehlers-danlos.org/
    I'm not a wheelchair user, as I'm in too much pain to sit, but it's good to see you can get the benefit of others' opinions, with different problems, who do use a wheelchair.


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  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team
    It's great to meet you @peachpit. I hope you'll find lots of support and friendship here on the community. 
    Community Manager
    Scope

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  • brujah81
    brujah81 Member Posts: 56 Courageous
    Hello my name is Kelly, i have Fibromyalgia, EDS and ME. i use crutches when i am indoors and a wheelchair when i am outside. I have been using the Scope website for a few days and i am learning my way around slowly. I dont know many people with EDS so its nice to have happened upon this thread

    Love Kelly
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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    A very warm welcome to the community @peachpit! :)
    Scope

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  • brujah81
    brujah81 Member Posts: 56 Courageous
    Welcome to @Peachpit :smiley: you have been a member about the same time i have!

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  • deb74
    deb74 Member Posts: 777 Pioneering
    hi @Peachpit. We are a friendly bunch and are all here to support each other! I have been a member on and off for a couple of years and there are always people here to talk!
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  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I first learned about EDS from Corrie....the actress who has EDS in real life too.

    Just been diagnosed with spinal MS.  been a wheelchair user for many years. My spine twists to the left, so tomorrow I am having a new back fitted to my chair...it`ll stop me falling over to the left.

    Scope is a great meeting place.xx
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  • BoomBoomToot
    BoomBoomToot Member Posts: 17 Connected
    Hi all I'm a fellow eds warrior, struggling with all the dislocating at the min. Hope you're all well 
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  • janer1967
    janer1967 Member Posts: 15,152 Disability Gamechanger
    @TwistedSista
    Hi my name us jane I am also a below knee amputee struggling getting to grips with a prosthetic leg is not as easy as you think is it. 
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