World Duchenne Awareness Day – An Open Letter to the Duchenne Community
To the International Duchenne Community
World Duchenne Awareness Day is held on the 7th September each year. Today Action Duchenne joins the International Duchenne community to raise awareness of this condition. We can make a difference for millions of people impacted by rare diseases.
This year, the theme for World Duchenne Awareness Day is Breaking Barriers.
We are still living in a world where Duchenne muscular dystrophy is a complex and life-limiting condition. Despite advances in research, there is still no treatment available for everyone living with the condition. It is characterised by severe and degenerative muscle wasting , with those living with the disease becoming wheelchair dependent before or during their early teens and losing upper body function as they go through adolescence. It impacts not just every skeletal muscle but the brain, heart and lungs too. With between 100 and 150 new cases diagnosed each year in the UK alone, and an average life expectancy of around 30, it is hard for families to see hope.
A diagnosis of Duchenne muscular dystrophy is life-changing.
People living with Duchenne and their families face huge physical and social barriers every single day. These barriers stop them from having the quality of life they deserve. They need access to proper care. They need accessibility in schools, workplaces, housing and public spaces. They need opportunities and inclusion in education and employment to allow them to reach their full potential and to achieve their goals. They need support to enable them to participate fully in every aspect of society. They need funding for vital research and advocacy for access to treatment.
Together we are stronger. Action Duchenne is committed to the fight against the condition and we are taking action to create a future where lives are no longer limited by Duchenne muscular dystrophy, and to provide much-needed support to the community.
We are constantly working to address the significant barriers faced by those living with Duchenne and their families. Our support for our community begins at diagnosis and continues throughout their journey, whatever it brings. Through science education, support for Newly Diagnosed families, online and face-to-face support groups, online counselling, programmes to increase opportunities for young people, research funding, advocacy for the availability of treatments, and our Annual International Conference, we are creating tangible change for the future of everyone living with Duchenne.
Join with my team and our community on World Duchenne Awareness Day 2023 as we continue our fight to break down barriers and for real hope for the future.
Florence Boulton, National Director, Action Duchenne
