This disorder is so variable, that it is very difficult to predict how the progression will affect our loved ones, and in what way. This page is dedicated to YOUR stories and experiences. If you would like to be included, please send us a message!
If you would prefer to be kept anonymous, we will be happy to change names and omit photos.
We hope, by sharing our experiences, we can help others who may be going through the same things as us. All our experiences are so different, we hope to connect families and spread support and awareness.
When I received the diagnosis, I searched the internet looking for stories of Congenital Myotonic Dystrophy, and struggled to find any. It took the best part of a year for me to make these connections with other families. I hope these stories are beneficial to you.