When he learns that he has spinal muscular atrophy (SA) in his late teens, Karl Belleville sees his future darken. The disease is rare, serious and above all degenerative. At the time he receives this diagnosis, no treatment is known, so his physical condition will only deteriorate until the loss of mobility leads him to use a wheelchair. However, a little more than ten years later, the picture is quite different for Karl Belleville, since he is back on his feet and can see a better future.
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Spinal muscular atrophy gradually affects motor functions. As neuromuscular disease progresses, walking, eating and even breathing becomes more and more difficult for people who have it. In the most severe cases – type 1 – AS is usually detected in infants before six months of age, and the majority do not live beyond the age of two without treatment. But for children, adolescents and adults who have type 2 or 3 spinal muscular atrophy, like Karl Belleville, the deterioration in motor skills manifests itself later. Which, too often, delays diagnosis and completely changes the course of a life, despite a less serious form.
Karl Belleville always believed he was just not good at sports. At the end of high school, he enrolled in a sports development program in the hope of developing his athletic skills. Without success.
The more I tried and the more I trained, the more my physical condition deteriorated. Regularly, I fell for no reason, I couldn’t even run, he says. It was my teachers who saw that something was wrong.
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Karl Belleville
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March 12, 2011. Karl Belleville is diagnosed with AS and at the same time learns of the existence of the disease after several years of symptoms and unanswered questions. He is 17 years old. Over the months, her symptoms keep on progressing. “I couldn’t use the stairs anymore, I avoided them at all costs. I fell more and more frequently and had less and less energy ”. Anyone who studied catering and dreamed of a career in this field must put an end to his dreams: working in the kitchen is too exhausting. He resigned himself to using a wheelchair for his outings. He is even on the verge of having his car and his accommodation adapted.
“It’s terrifying to think that our physical condition will only deteriorate,” says Karl Belleville. But my mom, my family and I never gave up hope that a cure would eventually be discovered. “
And that’s what happened.
A treatment that slows down AS
January 2019. Karl was fortunate to undergo a treatment that changed the course of his life forever. Six months after starting treatment to control his AS, Karl Belleville was able to put his wheelchair away. He regained motor skills, energy and independence that he believed had been lost for good. Even if he knows that he must continue to spare his physical efforts, the twenty-something leads an active and fulfilling existence, as is the norm for young adults of his age. The job. Building a nest with his lover. Camping weekends with friends. Two and a half years later, he feels like a new person.
The difference in my quality of life is nothing short of magical. I haven’t needed to use my wheelchair for about a year, he says. Before this treatment was available, I never thought it would be possible to leave the house without a chair again. Little by little, I regained my autonomy.
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Karl Belleville
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Karl Belleville, with AS and on treatment since 2019
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Today, spinal muscular atrophy can be treated. For patients with it, therapeutic solutions have changed the game. For Karl, who is walking normally again, his treatment allows him to control this neurodegenerative disease, to maintain his motor functions and even to regain some of them. The treatment brings hope for the patients, who see their quality of life improving. It also highlights the importance of early detection of this rare disease, through a simple genetic test. Because the earlier AS is diagnosed, the sooner it can be treated and controlled.
What I would like to tell a young person who receives a diagnosis like this is not to give up, says Karl Belleville. Ten years ago, I could never have hoped for a quality of life like the one I have today. You never know what the future holds.
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Karl Belleville
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Discover a community for Canadians affected by AS (in english only)
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