Muscular Dystrophy

[CarlyP]

Anyone have or know anyone with this?

 

[3rdtimelucky]

Yes my nephew has this

 

[Faythe]

A friend of mine has it

 

[CarlyP]

I'm currently going through quite a few tests, are they on any medication to make them better? X

 

[3rdtimelucky]

I know there are different forms of this.. My nephew is 11 and has a very severe kind. He has been in a wheelchair since he was 6 and over the last few years has very little power in his upper limbs! He is on meds, but all the medication in the world wont prolonge his life.. He has a life expectancy of about 17 years..
He was diagnosed at 2 years. It is one of the most horrible illnesses ive ever known, maybe thats becuase its so personal to me, but in his case he is a perfect able minded person and to see his body deteriorate when his mind is perfect is the saddest think in the world..
I wish you all the very best with your test results xxx

 

[CarlyP]

Thank you, I am hoping it isn't this but the signs and symptoms are there so having an ECG on the 17th so will see what they find.

Thank you for your reply x

 

[_Vicky_]

I know there are different forms of this.. My nephew is 11 and has a very severe kind. He has been in a wheelchair since he was 6 and over the last few years has very little power in his upper limbs! He is on meds, but all the medication in the world wont prolonge his life.. He has a life expectancy of about 17 years..
He was diagnosed at 2 years. It is one of the most horrible illnesses ive ever known, maybe thats becuase its so personal to me, but in his case he is a perfect able minded person and to see his body deteriorate when his mind is perfect is the saddest think in the world..
I wish you all the very best with your test results xxx

Is this Duchennes he has? I really really really send you all the love and support in the world for all your family. My son Sam had tests for DMD in August and it is just an awful devestating condition - I am still in shock anything so cruel exists! My son was all clear but I know there are many that arent so lucky - pointless post but I couldnt not reply. I lived through weeks of hell imagining the worst and well I dont know I will stop waffling now xxxxxxx

 

[hotdiana]

Well, not really, but I heard it's damn awful for the baby, but also for the parents.
From what I know, children are given strong medication (both steroids and supplements) in order to win the fight, but not always they can get over it