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.



One thought on “Cause

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s