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10 yr old daughter manifesting Carrier

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  • March 18, 2016 at 2:06 pm #125779
    10 yr old daughter manifesting Carrier

    Hi, my 10 year old daughter has missing exons in the 46-51 region & her creatine kinase levels are raised to 600. She has leg pains & she says “clicking joints”. Consequently She falls over. Her paediatric consultant has suggested she is a manifesting carrier of DMD or BMD. I am waiting for an appointment with a genetic consultant & also one that specialises in this.
    Any advice would be greatly appreciated as this is all new to me & desperate to find out as much info as possible.
    Thank you
    Gaynor.

    Gaynor
    Participant
    Posts: 0
    Joined: 18/03/2016
    March 29, 2016 at 8:43 am #126165
    Reply To: 10 yr old daughter manifesting Carrier

    Hi Gaynor

    This must be a very anxious time for you and your daughter. I hope you don’t have too long to wait to get some answers.

    You may have already come across this but there is an MDUK factsheet on the conditions you mention.

    http://cdn4.musculardystrophyuk.org/wp-content/uploads/2015/02/Manifesting-Carriers-of-Duchenne-and-Becker-muscular-dystrophy-.pdf

    We are here if you need to chat.

    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
    December 17, 2016 at 3:24 pm #145804
    Reply To: 10 yr old daughter manifesting Carrier

    Hi Gaynor, only just come across this. I am a manifesting carrier of DMD and was diagnosed age 11. I am happy to be of any help I can be.

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    December 18, 2016 at 1:42 pm #145806
    Reply To: 10 yr old daughter manifesting Carrier

    Hello and welcome to the forum Gaynor, As you already have discovered there are many kind folk around on here to help you through the difficult parts which you may well face. My number 2 son and myself were diagnosed with FSH when he was around the same age. It clearly comes as a shock, but be assured that there is much help and support to guide you through. Just ask the marvellous people here and do not feel alone.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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