Share a story

The stories featured on this area of the the website have been generously provided by people living with centronuclear and myotubular myopathy. Sharing stories at the Information Point not only gives much needed information but at times, gives hope to those that may have lost it, so we are grateful to everyone who has allowed their story to appear here or allowed us to link to their website.

There are currently three known patterns of inheritance for centronuclear and myotubular myopathy and stories are listed by condition type.

The All About Me Project

Between 2010 and 2013 the Our World newsletter featured interviews with people affected by centronuclear and myotubular myopathy and these can now be found on the All About Me Project page.

If you have found this section of the website useful, please consider sharing your own story. This can be emailed using the link provided at the bottom of this page. If you want to include photographs these should be in JPEG or GIF format.

In order to show the variations of the condition, we accept stories from anyone who wants to share their experiences and will publish good outcomes, bad outcomes and those outcomes that fall anywhere in between. If you or your child has a diagnosis of centronuclear or myotubular myopathy your story can be included here.

Please note that stories published here are available for all the world to see, so, please use your own good judgment as to what level of personal details you wish to provide.

Coming to terms with a diagnosis can be a difficult and emotional time, both for those with the diagnosis and those who love them - visitors to this website may find the Muscular Dystrophy publication, Everybodys Different, Nobodys Perfect and the Listen to Our Stories website of help.The Letterbox Library is a bookseller that celebrates equality and diversity with a large selection of books on disability.

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