September 7 is World Duchenne Awareness Day. On this day, the World Duchenne Organization raises awareness for Duchenne and Becker muscular dystrophy (DMD/BMD) around the globe. This year’s theme will be ‘Adult Life & Duchenne’.
Living adult life with Duchenne to the fullest
The number of adult men living with Duchenne is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and to participate in society.
Knowledge of optimal care
However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for the adult men. Only very few studies are being done to gain evidence on optimal care. Care is often fragmented and there is a lack of specialized medical teams/centers for adult DMD care. In addition, educational institutions and employers are often not equipped with the necessary facilities and support systems, and too many facilities are just not accessible, leading to extreme frustration.
Although the first papers describing the challenges as seen by this group were published more than 15 years ago, and since then documentaries have been produced and workshops held on these topics, a lot of work still needs to be done to improve the situation for adults with DMD around the globe.
On September 7 during World Duchenne Awareness Day 2021, the World Duchenne Organization asks you to act and start or accelerate activities to provide appropriate support and improve accessibility so that adults with DMD can indeed live their lives to the fullest, receive adequate care, and be given the opportunity to live independently and to participate in society.