Viewing 4 posts - 1 through 4 (of 4 total)
  • #151402
    Finding it hard to accept LGMD

    Hi all,
    Diagnosed with LGMD Type 2 about 11 months ago and slowly coming to terms with it. Been struggling for some time but always put it down to something else.
    If anyone is in a similar position it would be great to chat/catch up.

    Cheers
    David

    DavidJ
    Participant
    Posts: 0
    Joined: 01/09/2017
    #151459
    Reply To: Finding it hard to accept LGMD

    :waving: Welcome to TalkMD. You’re not on own with feeling like you are struggling. Although we all have different types of MD there are some things that we all experience the same.

    There are a few ways to get in touch with others in the same boat. If you are on Facebook there is the main MDUK page or there’s Trailblazers which is mostly 18-35 year olds.

    Most areas have Regional Muscle Groups where you can meet people in person Here’s a list of groups

    Glad you have found us :)

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #151489
    Reply To: Finding it hard to accept LGMD

    Hi David,

    I myself have been diagnosed with LGMD type 2B, I was diagnosed back in Jan, so little over 8 months ago for me. I too am struggling to come to terms with it, but I must say that family and friends have been ever so supportive, and although I do not talk about it much, it is good to know that I have people around me that I am able to talk to.

    If you wish to contact me directly feel free, always handy to have someones else to chat to.

    Thanks
    Jon.

    Jonno118
    Participant
    Posts: 0
    Joined: 08/02/2017
    #151570
    Reply To: Finding it hard to accept LGMD

    Hi David,

    I have an unspecified type of LGMD. I have yet to receive an actual diagnosis with my last muscle biopsy being in 2009. I suppose I have had LGMD for about 18yrs now. There has been a steady progression which has been hard to come to terms with more recently.

    Please do feel free to reply about your struggles and if I can I will try to share strategies that work for me, There can be challenges both physically and mentally/emotionally.

    Cheers for now

    Shevvy

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
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