MY STORY

At 12 years old, I was diagnosed with a rare genetic disease: spinal muscular atrophy. This degenerative condition attacks the nerves and causes atrophy and weakness in all muscle groups of the body.

The doctors told me then that I would no longer be able to walk between the ages of 15 and 20. At that moment, my world collapsed, especially since I played a lot of sports, particularly football. But my passion and strength of character pushed me not to succumb to the illness, but to accept it, even though it was difficult, particularly during adolescence, to cope with this new reality: no longer being able to perform certain small everyday tasks.

Despite my illness, I continued to play sports as much as possible. I even took the opportunity to earn my coaching qualifications. I always tried to stay active, swim, and play football, despite my mobility issues. My physical activity not only slowed the progression of the disease but also provided me with mental balance in managing my disability. While I was expected to end up in a wheelchair ten years ago, today I am still...
Standing tall and active as I approach 30.

In 2020, the CHUV (Lausanne University Hospital) introduced me to a new medication for my illness, which until recently was considered incurable. I began treatment at the HUG (Geneva University Hospitals), which was offering this medication to a patient for the first time, in May 2021. I now receive an injection every three months for a treatment that is one of the most expensive on the market. It cannot cure the disease, but its aim is to stabilize its progression.

For a long time, I hoped there was a cure, but without much conviction. Today, this therapy gives me hope and allows me, for the first time, to look to the future, to the long term, like going back to school or starting a family. And above all, and perhaps most importantly for me, I can be independent.