Patient care & support

Duchenne UK publish new guide to growing up with DMD

Duchenne UK have launched a comprehensive new guide to support families of teenagers and young adults with Duchenne muscular dystrophy (DMD).

Life changes for every parent when their child enters adolescence, but DMD brings additional challenges. That’s why Duchenne UK have launched the DMD Family Folder: Guide to Adolescence and Adulthood to help parents and families navigate their child’s changing needs as they grow up. 

The new folder follows on from the DMD Family Folder for newly diagnosed parents, which has helped more than 600 families with a new diagnosis of DMD since its launch in 2018.  

Thanks to advances in medical research, an increasing number of people with DMD are now living into adulthood. But the progressive nature of the disease means that the transition into adulthood can be an overwhelming time for young people and their families. 

As well as information on health and care, the folder provides guidance on life skills, education, work, hobbies and relationships. We encourage families of young people with DMD to help their teenager dream big and make the most out of life’s opportunities. 

Alex Johnson, co-founder of Duchenne UK, says:  

Duchenne UK is a parent-led charity. We know how daunting adolescence can feel when your son or daughter has DMD. So, quite simply, we want to help all the parents in the DMD community to have the resources and support they need during their son’s or daughter’s adolescence. We want to help them get the most out of life for their teenager, their family and themselves. 

Jon Rey-Hastie, CEO of Pathfinders Neuromuscular Alliance and a contributor to the Transitions Folder, says:  

“This ground-breaking and comprehensive folder has the potential to transform the lives of young people with DMD. By providing the tools and resources parents need to guide their teenagers with DMD through adolescence and into adulthood, it will help them to support their young people to pursue their goals and live happy and meaningful lives. Getting the support right in adolescence is vital in allowing young people to thrive in adulthood. I’m delighted to have been able to use my own experiences and those of the people Pathfinders supports to ensure this folder builds on the knowledge and experience of adults with DMD.” 

You can download the folder here or pre-order a print version of the folder now using our online form. 

We would like to thank Astellas Pharma Europe Ltd who have provided financial support for the production of the guide with no input into the content, and PTC Therapeutics Ltd who provided funding towards the guide through an unrestricted educational grant.

Published on 7 September 2021

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