It’s been a little over a year since I sat in a Neurologists office, with my husband by my side, and heard the words “I believe you have Facialscapulohumeral Dystrophy (FSHD)”.
My first response was, “say what?” It’s a mouthful for sure, but I’m fortunate my failing facial muscles are still able to say it.
Hello, my name is Rachel and I wanted to share my story with you because Muscular Dystrophy has impacted my life since well before my diagnosis. And, I believe more research and education will ensure Canadians like me don’t continue suffering with undiagnosed symptoms.
Muscular Dystrophy Canada (MDC) believes that too, but they need our support to help more Canadians living in pain. I hope you will read my story today, and consider making a donation so we can get people diagnosed quicker, find better treatments, provide support and ultimately find a cure.
For more than 20 years, I’ve endured fatigue, chronic pain and the frustration of not being able to determine what was causing my physical limitations. Many attempts were made to treat the symptoms but none were successful.
Finally getting a diagnosis was a relief. But learning I have FSHD is very distressing. Currently there is no treatment to stop, slow down, or reverse the effects. My muscles will forever continue to lose mass and strength.
Daily tasks like dressing, eating and walking, which were once second nature, have become difficult. I’ve lost the ability to do many physical activities I used to enjoy. I can no longer swim or go bike riding with my family. And even playing with my two young daughters can be difficult.
After my muscle mystery was solved, I was eager to learn more about my diagnoses. Thankfully we had somewhere to turn – Muscular Dystrophy Canada. They helped guide us through the diagnoses and over the last year we’ve created a network of support and friends. My family also decided to participate in the Walk for Muscular Dystrophy.
As a Pediatric Medical Radiation Technologist, I’ve cared for children and families impacted by various forms of Muscular Dystrophy over the years. Coincidentally, it was only three months before my own diagnoses that I learned about the Walk for Muscular Dystrophy from a patient.
Walks take place across the country between May and September to raise funds so MDC can continue to invest in important research, equipment and support services, including education, for families like mine, impacted by neuromuscular disorders.
My family joined a Walk for the first time in 2018 on a chilly September day in Calgary. Our team, The Muscular Dystrosaurs, donned our dino suits and braved the cold. We were rewarded with a friendly bunch of souls who were just as eager to walk or roll, and I took away more than I could know at the time. I made a connection with another family enduring FSHD. Knowing others who can sympathize with the progressive loss of function offers a great sense of comfort.
This year, I’m asking friends, family and colleagues to support the neuromuscular disorder community by donating to Walk for Muscular Dystrophy. I ask you to please do the same. You can help get Walk fundraising off to a great start by making a generous donation today. Because together we are strong! Together, we’re unstoppable!
Mom, wife and Walk for Muscular Dystrophy Ambassador