Daughter, 14, just diagnosed with LGMD

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  • #191749
    Daughter, 14, just diagnosed with LGMD

    Hi all,

    I’m not really sure where to start or what to ask. My Daughter has just been diagnosed with a form of Limb Girdle Muscular Dystrophy.

    I am worried, if not terrified about the future but being strong for my Daughter and of course, her siblings and my wife.

    Specific diagnoses is yet to be confirmed by genetic testing which is expected in early 2021, any words or advice or past experience very welcome. The condition is worsening, perhaps by the week.

    Thanks in advance.

    T

    Tommy Smythe
    Participant
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    Joined: 13/12/2020
    #191751
    Reply To: Daughter, 14, just diagnosed with LGMD

    Hello and welcome. Many of us on here have been where you are now, and have been through the whole gamut of emotions that you are no facing. You will have or support throughout, as will your daughter. Clearly though, for you, this is a very new and difficult situation. You will find that you are now on a learning curve, vene before the specific diagnosis. Attempting to learn as much as you can about your daughter’s condition will help to put it into perspective, and ask the right questions of those professionals who will be caring for her, and supporting your family. I hope you have looked at the excellent information available from MDUK https://www.musculardystrophyuk.org/wp-content/uploads/2015/02/LGMD-general.pdf and https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/limb-girdle-muscular-dystrophy/. There are useful connections on Facebook too.
    I wonder if you could also give us a little more information. For example is she under the care of a neurologist and a physiotherapist? Have any of her siblings been or planned to be tested?
    May I also quote what happened to my child. We both have FHSD, I was found when he was tested, supposedly as a carrier, I am now much worse than he. He has gone on to embrace his condition, and has successfully built his own computer business and already owns his own home despite being just in his mid thirties. The moral of the tale being that you should not try to predict your daughter’s future. Take each day as it comes, good or bad. Yes, plan ahead, for what immediate changes may become apparent, but also,when you do your reading and research, become aware of how much research work is being done, and how much can change.
    Please do come back to use with any questions, advice or even a rant. We will be here.

    Mike

    So many love songs, so little love.

    embayweather embayweather
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