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Hi, several days ago I have met a friend from school in the park. We haven't seen each other for more than 10 years. I was interested to know how is she and what was she doing. She told me that she is working for big pharmaceutical company but that her child is suffering from rare disease called nemaline myopathy. I have never heard about this disease so I would appreciate if someone knows more.

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Hi, I have heard for this disease ten years ago when my neighbor told me about their kid. It is rare form of myopathy often non progressive and non fatal. There are forms of this disease which are severe and fatal. In affected muscles, most often muscles on the hands, legs, trunk and face, there are cells with particles which are rod like particles.
This disease is inherited in dominant patter. Unfortunately like for the other myopathies there is no specific medicine.
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Hi there I stumbled upon this site just now.
This was posted over a year ago but if ya like more info I can help ya as I have it myself since birth

So if you like you can drop me line
Nina
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Hi Nina. Please email me as soon as possible!!! My little girl has NRM. What can I expect in the long term? How old are you? Do you have health issues? I have so many questions!!! We have tried everything in our power to help, but sometimes it seems that there is always another problem around. I am desperate!!!
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