Welcomes and introductions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Hey all ehlers-danlos warrior

BoomBoomTootBoomBoomToot Member Posts: 17 Connected
Hi all I'm Kelly I suffer with ehlers danlos, anxiety depression and a few more boring things... I just wanna be around some like minded people who won't judge me 

Replies

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Welcome to the community @BoomBoomToot. It's really good to have you with us. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Hi @BoomBoomToot - Welcome to this very friendly community. I've got the hypermobile type of Ehlers-Danlos Syndrome + neuropathic pain. :( There are quite a few members with EDS. Are you getting any help for your anxiety & depression if you don't mind me asking?
  • BoomBoomTootBoomBoomToot Member Posts: 17 Connected
    Hi guys thanks for the lovely welcome, @chiarieds I am on tabs for it but think I'm having a slip due to the amount of trouble my legs are giving me and all the "sorry there is nothing we can do" im getting from specialist and all that jazz, I have eds 3 which I'm sure is now named as you have said lol... Hope you are OK? 
  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Oh, I'm slowly disintegrating, but gracefully! Specialists gave up on me (+ my family) years ago. They're just at a loss aren't they, when they don't know how to help? Well, tbh, my son & I do get yearly echocardiograms & see a cardiologist afterwards, but that's all. I've got a great GP tho as he used to look after the founder of the EDS support group. She had the classical type, but it still helps he has some understanding. Is your GP helpful?
    Have you joined the support group? See: https://www.ehlers-danlos.org/


  • BoomBoomTootBoomBoomToot Member Posts: 17 Connected
    Yeah they sure are... My gp is amazing tho knows her stuff and is really supportive.... Yeah I'm aware of the support groups and soo would love to go to one but my anxiety gets the better of me every bloody time I try
  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Hi again @BoomBoomToot - I'm sorry to read you are troubled so by anxiety, & you've also mentioned depression. It's certainly not great living with EDS & the pain that can be involved. I'm going to ask my friend @thespiceman to see if he will help as he understands the mental health issues you have, & can offer some resources to help.
  • BoomBoomTootBoomBoomToot Member Posts: 17 Connected
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @BoomBoomToot   Pleased to meet you.

    I am one of the team of community champions.

    Thank you for my lovely friend  @chiarieds asking me to be involved in this post.

    Sorry to hear what your going through, depression anxiety I have and use my knowledge, education, expertise to help members of our community.

    I am disabled myself have had an addiction history sorted that out, still clean thirteen years. Knowledge experience on any of that if that is any cause for concern.

    Please if I can advise you need to speak to the following mental health charities.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    All offer the following, floating support, welfare, health advice. Benefit support, assistance and much more.

    Take clientele with disabilities as well mental health .

    Might not be in all areas.

    Please if I can help with anything.  Please get in touch happy to be supportive, offer compassion and empathy.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • BoomBoomTootBoomBoomToot Member Posts: 17 Connected
    @thespiceman....thank you reaching out and all the info I will go and look
    Also congratulations on 13 years keep up good work
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @BoomBoomToot    Pleasure to help you. Please if you need anything a chat or some one to speak to please get in touch.

    We are a supportive community.

    Friendly, care and share.

    Your not alone thank you for the kind words.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
Sign in or join us to comment.