We have launched a programme to drive better care for nutrition and weight management in Duchenne muscular dystrophy (DMD).

The programme is led by Dr Jarod Wong, consultant paediatric endocrinologist at the Royal Hospital for Children, Glasgow, and it has two strands.

1. The NutrInD (Nutrition in Duchenne) project, which will seek to understand nutrition for someone with DMD. This includes how much energy they would need daily and what their bodies’ muscle and fat stores are. This is being led by Vasiliki Ioannidou, a research assistant with a Master’s in Clinical Nutrition.
2. A DMD Care UK Working Group. DMD Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack. The DMD Care UK Nutrition Working Group aims to develop guidance and materials to support better diet and nutritional management in people with DMD and to gather evidence, through research, of the impact of steroids on weight. This is being led by Dr Laurie Cave, a children’s dietitian and researcher. 

Jarod: I’m a consultant based in Glasgow with a special interest in hormones and bone health, especially in people with DMD. I lead the
nutrition project, supported by Duchenne UK, to create national guidance on nutrition for people with DMD and to carry out research in this area.
Laurie: I’m a children’s dietitian and researcher. Together with Jarod, I am leading a group of experts from across the UK (the Nutrition Working Group of DMD Care UK) in developing nutrition guidance and resources for children and young people with DMD.
Vasiliki: I’m a research assistant with a Master’s in Clinical Nutrition. I work on research projects in people with DMD, like the NutrInD (Nutrition In Duchenne) Study and support Laurie as part of the Nutrition Working Group of DMD Care UK.

Jarod: This is an important project funded by Duchenne UK and partners. Young people with DMD often have a tough time managing their weight. Many become overweight during childhood and teenage years, and later on, being underweight can become a problem. Both can lead to health issues. The nutrition project is all about finding better ways to support people with DMD. We’re working on clearer guidance for managing weight and dealing with any related health problems. We’re also creating easy-to-understand resources together with families and young people living with DMD. We know how hard it can be to keep a healthy weight with DMD, and we want to make a real difference.

Laurie: Well, I think nutrition is important for everyone! But for children and young people with DMD, eating and drinking well can help them be a healthy weight and grow as much as possible. It helps muscles and bones to be stronger, and tummies to work well. It also gives energy to do activities and have fun.

Laurie: Everyone is encouraged to choose a wide variety of foods, so that overall, our bodies get all of the different nutrients we need to stay healthy. With DMD, choosing high-quality foods and drinks is really important – by this, I mean foods and drinks that have a lot of nutrients, rather than just a lot of energy. This is key when appetites are large due to steroid treatment, and it’s a challenge not to take in more energy (calories) than needed.

Laurie: Starting with the nutrition and weight management sections of the 2018 international standards of care for DMD, we’ve looked in detail at how these can be tailored for use in the UK’s NHS. We’ve done this by examining what currently happens in the NHS, what evidence is available from research studies, and what the experts in DMD agree is best practice. By bringing all of this together, we will have UK standards of care for nutrition and weight management for children and young people up to 18 years of age. We will also have guidance and resources to help work towards delivering these standards of care across the NHS.

Vasiliki: I’m working on the NutrInD research study funded by Duchenne UK and partners, which looks at nutrition in people with DMD. We want to understand how much energy their body needs daily, what they usually eat, and what their bodies’ muscle and fat stores are. There’s not enough good information on this right now, especially after young people stop walking, so our study will help fill that gap. We hope it will lead to better nutrition advice and support for people with DMD.

Vasiliki: If you’re a young person with Duchenne Muscular Dystrophy—or a parent or carer—we’d love to hear from you about the NutrInD study. We’re looking for participants aged 5 to 21 who have been on daily steroids for at least a year. To find out more, call us on 07484 536272 or email [email protected]. We’re happy to answer any questions and explain how the study works. We really need your help.

Laurie: This summer, we will begin online group sessions for children and young people with DMD and their families. These will be practical and interactive sessions that aim to bring the nutrition guidance to life. They will also be an opportunity to meet, and learn with, and from, other families. Details will be posted on the Duchenne UK website. Also, in the future, we’re planning to develop a recipe bank for children and young people with DMD based on a survey we’ve conducted. We are very keen for families to be involved, so please get in touch if you have ideas!