Cause

Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms, x-linked, autosomal recessive and autosomal dominant. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life.

My husband and eldest daughter Toni are diagnosed with one of the forms of this condition and Toni now runs The Information Point for Centronuclear and Myotubular Myopathy and The Big Sunflower Project, to provide information and support and to raise awareness of the conditions.

To learn more about centronuclear and myotubular myopathy please see below.

mike-toni-di

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