My Life with FSHD

Riley Ambrose
2 min readJun 29, 2021


At the age of 11, I was diagnosed with a muscle disorder called Facioscapulohumeral Muscular Dystrophy.

This is a type of muscular dystrophy that causes the typically dormant DUX4 gene to be active. This gene releases a toxic protein that causes the atrophy of muscles throughout the body, particularly in the face, shoulders and upper arms.

FSHD often also affects muscles in the lower-legs and torso.

Although the effects of this disorder can vary drastically, my symptoms have included a hearing loss, some difficulty with speech, an inability to smile fully, an inability to lift my arms over my head, being susceptible to falling, and needing to use a walker or wheelchair for anything over a medium distance. This disability has taken a lot from me, but I also look at it as sort of a gift.

Being disabled is not a rosie life, but it gives me a perspective that I would not have otherwise. It also helps to keep me grounded, as I cannot go long without thinking about the barriers that stand in my way.

This isn’t to say that I haven’t had a good life. I am extremely lucky to have a family who can support me, and the fact that I’m writing this to be posted on the intranet for Payments Canada is still surreal to me.

While a disability can take a lot away from someone, it can also be a guiding light to bigger and better things. If it weren’t for my physical limitations, I likely wouldn’t be pursuing these crazy intellectual activities I find myself doing, and I feel somewhat grateful for that.

Riley Ambrose is a Canadian Student Association Director, Student Payments System and Strategy Analyst, and 3rd-Year Business & Philosophy Student. All of the opinions expressed in this article are his own and do not represent those of any organization he is associated with.

You can find Riley on LinkedIn ( or Instagram (@ril3sformil3s)



Riley Ambrose

Policy Enthusiast | Student Association Director | Business & Philosophy Student | Advocate