A recent survey study conducted by the Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD) looked at how children and teens with Duchenne muscular dystrophy (DMD) in Switzerland experience school, social life, and everyday difficulties. Forty participants aged 8 to 18 took part. The survey asked about their mobility, school situation, free time, and overall well-being.
Encouragingly, most of the boys—83%—said their quality of life was good or very good. Mobility seemed less important than being socially active—those involved in sports, music, or group activities often felt better. Still, over half didn’t take part in regular leisure activities, pointing out the need for more adapted options.
Around half of the boys attended a special needs school, while many in regular schools received extra support. Difficulties with concentration, planning, and organization were common and linked to school and social challenges.
These findings show it’s not just muscles that matter. Neuropsychological skills (e.g. the way young people think and behave) and social support also shape how young people with DMD feel and function. Early support in school and access to suitable activities can make a big difference.
Swiss-Reg-NMD plans to follow up with these young people in a few years to learn how their school paths and quality of life change over time.
A big thank-you goes to all the children, teens and families who made this study possible.
Takeaway: Helping children and teens with DMD means more than focusing on muscles. Support for learning, thinking, and everyday participation matters just as much.
The article has been published here: Education and participation in children and adolescents with Duchenne muscular dystrophy in Switzerland