Viewing 6 posts - 1 through 6 (of 6 total)
  • #129276
    Lynnjean 17

    Hi my daughter has Mersin negative muscular dystrophy just wondering if there are anymore girls with this condition and how ots effected them thanks

    Lynnjean 17
    Participant
    Posts: 0
    Joined: 13/05/2016
    #129278
    Reply To: Lynnjean 17

    We have had members with this condition.

    Not common though. They might not see your post
    immediately. Hope you get answers.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #129279
    Reply To: Lynnjean 17

    This datasheet can be downloaded from
    The MD UK site:-

    It includes links to other factsheets that may be of use.

    http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/Merosin-deficient-congenital-muscular-dystrophy.pdf

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #129280
    Reply To: Lynnjean 17

    Hi Lynn

    I don’t know if you are aware of this or are on Facebook but I know of a closed member group called Positive Mums for Negative Merosin Kids. It might be something you want to check out?

    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
    #129282
    Reply To: Lynnjean 17

    Thanks for your help
    :ty:

    Lynnjean 17
    Participant
    Posts: 0
    Joined: 13/05/2016
    #129353
    Reply To: Lynnjean 17

    Hi Lynn,

    The Care and Support Team at MDUK can put you in touch with another mum who has a daughter with this condition if you like? They are part of our peer support network.

    If this might be something you’re interested in or you’d like more information please do email me on m.rees@musculardystrophyuk.org

    Best wishes,
    Maddy

    Care, Information and Advocacy Manager
    Muscular Dystrophy UK

    Maddy Rees
    Participant
    Posts: 0
    Joined: 25/02/2015
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