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Muscul Dystrophy

(3 Posts)
loopylou10 Thu 03-Dec-15 19:47:14

My best friend of 33 years has just found out that her son may have Muscular Dystrophy. They haven't had an official diagnosis, but have been told that their sons levels for the muscular genetics testing came back very high, which is a strong indication for Duchenne muscular Dystrophy. They should have an official diagnosis withing 8 weeks. Her son is nearly three, he can walk but can't run, he is still quite 'toddly' when he walks and not as agile as some of the children of his age. He hasn't started speaking but has a very good understanding of general instructions like "go get your shoes" etc. To look at this boy he looks like a normal healthy boy, so understandably my friend and her husband are devastated at the prospect of watching their seemingly healthy son deteriorate before their eyes, and who may live no longer than 30. I would like to hear from anyone who has been in this situation and how you dealt with it. As friend I am struggling to find the words to make her feel better. All I can do is tell her I'm here and offer help. I've also tried to reassure her that as they haven't had a formal diagnosis then they should try and cling on to that little bit of hope that it turns out to be something else

cestlavielife Thu 03-Dec-15 22:04:28

One day at a time.

AalyaSecura Thu 03-Dec-15 22:14:07

I have MD in my family (though not duchenne), and Muscular Dystrophy UK have been fabulous. Support networks, and really strong links with those involved in research. My experience of those working in MD research is that they work really closely with patient groups, and MD UK are very successful in facilitating that. Maybe too early for all of that for your friend I guess, but it's there if and when they want to look into it.

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