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 over many years.

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.

The 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. These stories can also be read on this website or by visiting the All About Me Project website.

Other websites

Stories can also be found on the websites listed below.

Share your story

If you have found this section of the website useful, please consider sharing your own story too.

Stories are accepted from anyone who wants to share their experience and we 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.

Further information

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 following information useful.