Real Stories

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.

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 we received the diagnosis, we searched the internet looking for stories of Congenital Myotonic Dystrophy, and struggled to find any. We hope these stories are beneficial to you.



Born: 2020

Area: Bradford

"Giving birth is supposed to be a joyous month and it was, but the euphoria gave way to a level of awful uncertainty I had never before experienced"

Read Daisy's story HERE.


Our 2021 Awareness Day Photo Competition Winner!

Area: Sunderland

Hollie was diagnosed in 2014 and has now completed her Photography degree. Upon diagnosis, she was concerned she would be unable to live a 'normal life' - but despite many medical appointments and illnesses, she is doing just that!

Read Hollie's story HERE


Born: 2011

Area: Southampton, UK.

Diagnosed at birth, there was no prior knowledge of DM in the family.

Click HERE to read Emmie's story.


Born: 1999

Area: North Lincolnshire, UK

Dregan was diagnosed at age 15, after a lifetime of questions with no apparent answers.

Dregan has Congenital Myotonic Dystrophy, inherited from his father. This is very rare, and I am interested in finding other familes with Paternal Inhetritence of CDM.

Click HERE for Dregan's story.



Born: 2011

Area: Hull, UK

Josh was diagnosed with Congenital Myotonic Dystrophy at birth, the condition was known within his biological family.

Sarah met Josh whilst working on the ward he was on, and caring for him. She fell in love with him and took him home, adopting him shortly afterwards.

Read Josh's story HERE!


Born: 2013

Area: Blackpool, UK.

Freya was diagnosed with Congenital Myotonic Dystrophy at 18 months of age. Like many of our experiences, there was no prior knowledge of the disorder in the family until the diagnosis.

Read Freya's story HERE.


Born: 2007

Area: Essex

Bobbie is a lovely girl living with Congenital Myotonic Dystrophy. She is a happy little girl who adores singing and dancing, and certainly a character.