CONGENITAL MYOPATHIES 1 – NEMALINE

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Nemaline myopathy (NM) constitutes a clinically and genetically heterogeneous spectrum of muscle disorders. Until very recently, little or no scientific attention has been paid to the lived experience and functioning of people with neuromuscular disorders. The same is true for the impact of eating and nutrition on the daily life of these patients. Persons with NM often have weakness of the facial and bulbar muscles and secondary structural abnormalities of the oral region, complicating eating and swallowing, and likely affecting their nutritional state.

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