You call it Duchenne…
We call it a neuromuscular disorder.
Alex Harold is starting his final year of university. He loves to play video games; cheer on his beloved Raptors and Leafs; and, he lives with Duchenne Muscular Dystrophy. Diagnosed at the age of four, Alex demonstrates every day that a diagnosis does not define you. He has fought tirelessly for the accessibility he needs to finish his degree, and his hard work has helped others dealing with their own accessibility challenges.
He wants you to know that while you may have another diagnosis or a different genetic condition, he is here with you to fight all forms of neuromuscular disorders.
What you need to know about Duchenne
Duchenne Muscular Dystrophy (DMD) is a genetic disease characterized by a progressive muscle degeneration. It is caused by an absence of dystrophin, a protein that supports the integrity of muscle cells. Symptoms are usually detected in early childhood. The disease primarily affects boys but in rare cases can also affect girls.
Symptom onset can be as early as age three and usually affects the muscles of the hips, pelvis and shoulders, progressing to the skeletal muscles. By the early teens, the heart and respiratory muscles may also be affected. A diagnosis of DMD includes a shortened life expectancy and the expectation that eventually, equipment such as a wheelchair and respiratory aids will be required. With exciting new advances in research into DMD over recent years, incredible increases in quality of life and life expectancy are being experienced by patients.