Alex’s Wish invests into a new project to improve diet and nutrition for people with DMD

December 4, 2023 2:52 pm

We are pleased to announce that we have funded £50,864 towards the funding of a project to drive better care for nutrition and weight management in Duchenne muscular dystrophy (DMD).

The project is led by Dr Jarod Wong, consultant paediatric endocrinologist at the Royal Hospital for Children, Glasgow. The aim is to develop guidance and materials to support better diet and nutritional management in boys with DMD and to gather evidence, through research, of the impact of steroids on weight.

Need for support with diet and nutrition

Weight gain is a serious health complication, common in DMD. It can be caused not only by limited physical activity after the loss of ambulation (walking), but also by the long-term use of steroids. This can lead to obesity, which has a major impact on cardiac and respiratory function, mental health and quality of life.

Lack of diet and nutrition support in current DMD care

There is currently no nationally agreed guidance on diet and nutritional management for the care of people with DMD and it is rarely included in clinical management in the UK. There is also a lack of resources and guidance for DMD diet and nutritional management.

This is despite the need for better diet and nutritional management in people with DMD being recognised. The current international standards of care for DMD recommend that a registered dietician should assess nutritional status and create a specific nutritional plan. However, this rarely happens in the UK.

Project Aims

The project will have five strands that aim to increase understanding of diet and nutritional needs in DMD so that guidance and resources can be developed.

Understanding diet and nutritional needs

  • The first is a retrospective study that aims to identify when people with DMD gain weight gain after starting to be treated with steroids and once they stop walking.
  • The second is a study that will seek to identify how many calories people with DMD need, for those who are and aren’t being treated with steroids, and who are and aren’t walking.
  • The third will be research to understand what people with DMD, their families and healthcare providers think about their current diet and how weight gain impacts their daily lives. It will also seek to understand what diet and nutrition information and guidance they are receiving in clinics. The research will also ask their opinion of the development of a structured nutritional programme specific for young people with DMD.

Developing diet and nutrition guidance and resources

  • The fourth strand will develop nutritional information resources that are tailored specifically for people with DMD. It will include leaflets and videos covering all aspects of nutritional guidance for DMD.
  • The fifth strand will be the improvement of clinical care via development of a pathway for referral for nutritional advice. This will be supported through our DMD Care UK programme.

Emma Hallam, Founder of Alex’s Wish says “When we found out about this project, I jumped at the chance of supporting it.  We know first hand the impact that steroids have on our boys living with Duchenne.  Alex has been on steroids since the age of 4, and one of the biggest side effects is weight gain.  Alex has struggled for many years now with losing weight, we hope that these new guidelines will provide much needed advice and support for families. It not only will help with health but also wellbeing too. We would like to thank our amazing supporters, as your hard work and support as meant that we could fund £50,864 into this important work.”

Community support for project

The need for and importance of the project is reflected in the wide range of donors who are helping fund and support it.

The following charities have been instrumental in helping this project to happen: Duchenne UK, Joining Jack and the Family and Friends Funds: Backing Jack, Help Harry, Jack’s Misson, Jacobi’s Wish, Project GO, Smile with Shiv, Team Felix and Access to Life.

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