The story of Michael
I am one of 300 million people in the world living with a rare disease. I have Becker Muscular Dystrophy and was born missing exons 45-55 of the dystrophin gene – one of the longest genes in the human body.
Dystrophin is a protein found in skeletal muscle and is key to muscle growth and health. I was diagnosed in 2009 at age 43. I am now 56 years old and use a wheelchair full one. While having a neuromuscular disease has been challenging, I have worked a full career of 30 years in education and I am a Vice-Principal. I use this disease as an opportunity to raise awareness about Muscular Dystrophy and to advocate for accessibility and inclusion. Destigmatizing disease and disability is important, as well as raising awareness to increase the chance of finding cures for rare diseases.