Duchenne

Duchenne muscular dystrophy (DMD) is a rare genetic disease that mainly affects the muscles. It is caused by the absence of a protein called dystrophin, which is essential for muscles to function properly and to be protected.

Over time, the muscles become progressively weaker. The disease can make certain movements increasingly difficult and can also affect the muscles needed for breathing, as well as the heart.

There is currently no treatment that can completely cure the disease, but different forms of care and certain treatments can slow some of its consequences and improve quality of life.

Everyone experiences the disease differently. On this site, I mainly want to share my personal experience with Duchenne, my daily life and the difficulties I face, but also everything I continue to do: sport, school, going out and my projects.

When I was little, despite the disease, I could still walk. I was able to do so until around the age of 10. As Duchenne muscular dystrophy progressed, my muscles gradually lost strength, and today I use an electric wheelchair.

I now have very little strength in my arms and the rest of my body, which means I need another person's help with almost all the activities in my daily life.

The disease also causes a lot of fatigue. Some things that may seem simple require much more energy for me.

Despite this, I try to live my teenage life, pursue my projects, go to school, go out, enjoy time with my loved ones and, above all, keep practising my passion: Powerchair Hockey. 🏑