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://oldsite.musculardystrophyuk.org/wp-content/uploads/2015/02/LGMD-general.pdf and https://oldsite.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.