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Congenital muscular dystrophy

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  • September 19, 2013 at 11:40 am #75029
    Congenital muscular dystrophy

    Hi I just found out my 2o months old had congenital musclar dystrophy , any one been diagnosed with this , and how serious is this.

    Danish1
    Participant
    Posts: 4
    Joined: 04/09/2013
    September 19, 2013 at 12:43 pm #91153
    Re: Congenital muscular dystrophy

    You may want to check this out on the main site Congenital muscular dystrophy (CMD)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    September 21, 2013 at 8:56 am #91154
    Re: Congenital muscular dystrophy

    Hi Danish,

    I have CMD and am happy to answer any questions you might have either on here or via Private Message if you would prefer. I was diagnosed with CMD at the age of 6 by the Dubowitz Muscle Clinic. Over the years certain sub-types have been ruled out for me and as yet they are yet to pinpoint my exact genetic diagnosis (am now 35) but I have learnt that there is so much variation within the CMD group of conditions.

    Sending you my very best wishes, give yourself time to absorb what you have been told and what you have read and remember we are are here if you need 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
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    Posts: 2,246
    Joined: 05/03/2015
    September 22, 2013 at 5:16 pm #91155
    Re: Congenital muscular dystrophy

    Hi Danish!

    I also have CMD; I’m diagnosed with merosin-positive type, but it has not been narrowed down to which sub-type it is. I was diagnosed by muscle biopsy when I was around eighteen months old, but have not had any genetic testing since (I’m now 22). Like Sarah, I’m happy to help and answer any questions you might have. Please take care of yourselves while all the information sinks in, we’ll be thinking of you.

    catherine
    Participant
    Posts: 24
    Joined: 08/02/2011
    September 26, 2013 at 10:10 pm #91156
    Re: Congenital muscular dystrophy

    Thank you every one for replying , means a lot so please can you tell me can you walk ?and how is your day to day life, my son can’t lift his head also can’t roll over, so I’m really stressed and emotional at this time just want to pick him up and run away sometimes, I’m so sacred of losing him .He is my youngest I have 2 more boys which r fine , and I have been told he might walk but will take longer, so any information will be appreciated ,
    Thank you all a lot ,( Hanans mum )

    Danish1
    Participant
    Posts: 4
    Joined: 04/09/2013
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