Guest article by Duchenne UK
It’s World Duchenne Awareness Day on 7 September.
Duchenne muscular dystrophy (DMD) is a genetic disease that is typically diagnosed in childhood between the age of three and six. DMD almost always affects boys, and there are about 2,500 people in the UK living with DMD.
It causes muscle weakness and wasting. It eventually affects all the muscles in the body, including the heart and lungs. There is currently no cure for DMD, but there are treatments and therapies that can slow down DMD progression and improve quality of life.
Breaking down DMD barriers
This year’s World Duchenne Awareness Day theme is breaking down barriers in DMD.
There are several ways that barriers are starting to be broken down for DMD, from accessing care to education.
Duchenne UK is a charity that is working to break down these barriers. It was set up in 2012 by Emily Reuben and Alex Johnson following both of their sons being diagnosed with DMD.
In 11 years, Duchenne UK has raised more than £20 million and used this money to:
- Fund clinical trials of medicines that are now showing promise for DMD.
- Set up DMD Care UK, a national care programme for patients with DMD to stop patients with DMD dying too young because they were not getting the right care. The programme is establishing best practice across all the disciplines involved in DMD care, and works to ensure all medical professionals and parents know exactly what treatment children and adults with DMD need.
- Create a DMD medical research hub with hospital sites across the country, which has led to more trials for DMD treatments than ever before.
- Develop innovative technologies, the SMART Suit and Dream Chair, to support the independence of people with DMD.
Sharing how barriers have been broken down
But there are some places where the DMD barriers are still very much up.
The DMD community is highlighting this key issue and sharing their experience of either how they have faced or broken down DMD barriers this World Duchenne Awareness Day.