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Beker muscular dystrophy

Painterman123Painterman123 Posts: 2Member Listener
I am lucky enough to be a bmd sufferer, strange you might think to say lucky, but there are far worse types of md in the world and I aint got them...I don't know any other sufferers and would like to meet someone on line to chat. To compare notes if u like.

Replies

  • Adam_ScopeAdam_Scope Posts: 164Member Pioneering
    edited February 28

    Hi @painterman123

    Welcome to the community,

    To get you started, take a look through our recent discussions  and community guidelines. Feel free to contribute we are a chatty bunch.

    Let us know if you have questions

  • Sam_ScopeSam_Scope Posts: 7,477Administrator Scope community team
    Welcome to the community @Painterman123
    The Muscular Dystrophy association may be able to help connect you with other people with Beker Muscular Dystrophy, they say:
    People we know who are living with muscle-wasting conditions have told us how helpful it is to talk to somebody who knows what it’s really like. Somebody who has been through the same sorts of things as you.

    So we have set up a number of ways to help you do just that. From our online forum to our local Muscle Groups and our Advocacy Ambassadors, there are hundreds of people who want to help – and who really do understand.
    Talk to our peer support volunteers

    We have a number of peer support volunteers, people who understand what you are going through, no matter how rare the condition. We can introduce you to one of them so that you can contact them confidentially to talk about how you are feeling. Get in touch to find out more or fill in the form below and we will get in touch.

    I was just wondering with your username are you a painter as in an artist or as in a decorator? Would love to hear more!

    Scope
    Senior online community officer
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Hi @Painterman123, and a warm welcome to the community!

    You appear to be the first person to discuss Beker muscular dystrophy here on the community, although there was a related discussion from a parent in the past. Would you like to tell us some more about your experiences?

    I'm also tagging in @EmmaP94 who's written some great guest blogs for us and is a content advisor at Muscular Dystrophy UK!
  • EmmaP94EmmaP94 Posts: 4Member Courageous
    Hi @Painterman123,

    Welcome to the community and thanks Pippa for tagging me.

    Yes I’m a member of the Content Advisory Group at Muscular Dystrophy UK. We are a team of volunteers who either have MD, have family or friends with MD or are healthcare professionals working with people who have MD. I know many friends and acquaintances with MD and use my knowledge of MD from them, my overall experience of being disabled (I have CP  and registered blind) and my journalism background to help MDUK shape their online, media and marketing content.

    Like with Scope, MDUK have a website filled with info on MD, advocacy support, MD groups plus much more: https://www.musculardystrophyuk.org/

    We also have a Facebook Group “Muscular Dystrophy UK Trailblazers” where you can share stories and get advice from others with MD - https://m.facebook.com/mduktrailblazers/

    hope this helps and do let me know if you need further info?! 😀
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Great response, thank you @EmmaP94!
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