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5 year child diagnosed with innate myopathy. Is there any effective treatment?

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Practicing since : 2000
Answered : 37 Questions
I have a niece (about 5). She is diagnosed with innate myopathy. It's not Duchenne's, it's not Becker's. It's not nemaline. Is there any kind of officially approved and/or experimental treatment for that kind of myopathy?
Posted Mon, 27 Aug 2012 in Brain and Spine
Answered by Dr. Neeraj Baheti 18 hours later
Welcome to healthcare magic
I am sorry to say there is no proven or approved or expermental treatment for innate myopathy

Best wishes
Dr. Neeraj Baheti
Above answer was peer-reviewed by
Follow-up: 5 year child diagnosed with innate myopathy. Is there any effective treatment? 3 hours later
I forgot to clarify that I'm looking for such a treatment anywhere in the world. This includes North Amerrica, Euorope, Israel, Australia and any other place where the medical science is well developed. Are you absolutely sure that there is no experimental treatment about the innate myopathy? I expect to receive not just a simple yes or no, but some more detailed info as a result of thorough research.
Answered by Dr. Neeraj Baheti 19 hours later
Sorry i dont want to disappoint you. As you are aware it is a very rare type of congenital myopathy. The data available is in form of small case series.
It is difficult for a single center to have enough cases of this type of myopathy. To the beat of my knowledge there are no multicenter or collaborative studies going on for treatment of innate myopathy.
Still you can consult a neuromuscular expert at mayo clinic Rochester or at Washington university.

Best wishes,
Above answer was peer-reviewed by
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