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My 17 years old son is diagnosed with nemaline rod myopathy I am shocked for I never heard of it and am desperate for this is not the first time he has health problems. I mean he was always a weak child with slow muscle development and as a kid he was having constant respiratory problems but all this ended up successfully or it is just what I thought and now this nemaline rod myopathy-is there any way out of this- I see him now he is constantly tired with almost daily headaches I don’t know what complications he don’t have it is hard to believe all this… anyway is this nemaline rod myopathy condition treatable? Thanks!

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This nemaline rod myopathy is genetic related and it is very common condition in persons who suffered as a child from exactly what you have described-muscle weakness and frequent respiratory problems so all these condition are practically cause of nemaline rod myopathy. I don’t know what would be the right treatment but if you ask me good nutrition rich in riboflavin, coenzyme Q and foods rich in amino acids might help as well as the proper physical therapy that would fit this nemaline rod myopathy condition.
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For the best info relating this VERY RARE condition, you should go to ***** . This is the official website for NM. Respiratory issues, sleeping problems, headaches, fatigue, are all symptoms.

**edited by moderator** **web addresses are not allowed**
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Hi, I have Nemaline Myopathy and would like to suggest that you go on a website that was developed by a man who also lives with this disability. It is full of resources. Sometimes, when people get older they require more help with breathing while they sleep. If your son is complaining of headaches and fatigue it might be a good idea to get this checked out as if it goes untreated can cause his health to deteriorate.
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