Patient care & support

Parents of children with Duchenne muscular dystrophy (DMD) urged to read new potentially life-saving recommendations

Co-founder of Duchenne UK, Alex Johnson, has urged families to read new heart care guidelines that could be lifesaving. They were developed by expert neuromuscular clinicians and patients to ensure patients have access to the best care available through the NHS. 

Today, the UK specific guidance on best to care for the hearts of DMD patients is being published in a respected medical journal, BMJ Open Heart, and has been endorsed by the British Cardiovascular Society.  

The recommendations are the result of a nationwide programme, DMD Care UK. The programme is led by Duchenne UK and co-founded by Joining Jack and the Duchenne Research Fund.  The project is bringing together experts from the John Walton Muscular Dystrophy Research Centre at Newcastle University and the North Star Clinical Network and DMD patients and families to improve and equalise care across the UK.  

Alex Johnson, co-founder of Duchenne UK, said “While Duchenne UK is investing in vital research into ground-breaking treatments, improvements in care will make the biggest impact on the length and quality of life for people living with DMD today. Early intervention is crucial for protecting the heart, so we hope that with proper implementation of these recommendations, no child or adult in the UK will die needlessly from DMD-associated heart complications.” 

A survey of families carried out last year found that care for the heart varied wildly and that patients and parents were unsure about when and why heart checks were performed, and whether their children were being given the optimal medications at the right ages.  

This led to anxiety and confusion among both patients and healthcare professionals. Most worryingly, this has led to preventable deaths from heart failure in both DMD boys and female carriers. 

Mum Caroline and her son Josh, who passed away from DMD-related cardiomyopathy aged 11

Caroline and her son Josh, who passed away from DMD-related cardiomyopathy aged 11


Caroline Tress lost her son Josh Morris at the age of 11 from heart failure as result of a cardiomyopathy. She has urged every family in the UK to read these guidelines:  

“My son Josh was loved by everyone who knew him. He brought a smile to the face of everyone who met him with his funny and cheeky personality. I wish these recommendations had been developed when he was alive.  

Every Duchenne family in the UK should read the patient guide. It’s important to know how your child’s heart should be monitored and treated. You are your child’s biggest advocate. This knowledge will allow you to discuss your child’s cardiac care with their clinical team and work together to ensure they receive the best care. I never want another parent to go through what I have been through since losing Josh.”    

The new recommendations set out the care that every patient should receive in the UK, including how regularly they should receive heart check-ups and recommended ages for starting medication. Based on the International Standards of Care for DMD, published in the Lancet Neurology in 2018, they have been developed by UK cardiac and neuromuscular experts, working together with DMD patients and parents/caregivers, to add specific guidance relevant to the UK healthcare system.  

Download an accessible version of the guidelines for families or read the full clinical recommendations in the BMJ Open Heart

To find out more, sign up to hear about the latest news and resources from DMD Care UK

Published on 19 October 2022

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About DMD Care UK

DMD Care UK is a nationwide initiative aiming to ensure that every person living with DMD in the UK has access to the best care, no matter where they live. The project brings together expert clinicians and the patient community to agree, communicate and implement DMD standards of care recommendations.

DMD Care UK is funded by Duchenne UK, The Duchenne Research Fund and Joining Jack who are working in collaboration with the John Walton Muscular Dystrophy Research Centre and the North Star Clinical Network.