Sophie Finn is a student, a C+F Youth Ambassador, a soccer coach, and a JDM warrior. This is her story.

My story began in Grade 7, when I started to experience unexplained pain in my lower back. At the time, I was playing soccer and my goal was to make it to university. As a hardworking, dedicated player, I was on track to reach this goal. Little did I know, however, that my back pain would worsen, my muscles would deteriorate, and I would eventually lose the ability to walk, let alone score a goal. I was diagnosed with a very rare rheumatological disease that changed everything I thought my early teens would be and pivoted me in a direction I could have never imagined.

My parents and I visited multiple specialists in an effort to find the source of my back pain. Weeks turned into months and the pain in my back progressed to weakness in my arms and legs. Despite trying various treatments from chiropractors, kinesiologists, and naturopaths, nothing seemed to work. After months of searching, we eventually got an appointment with a pediatrician who told me to stop playing sports, continue the treatments I had been trying, change my diet, and come back in four weeks. Unfortunately, the pain and weakness in my arms persisted. We were stuck in a frustrating cycle of waiting to see how my condition would progress with no real answers.

Desperate for help, my mother called Children’s Hospital. She asked the operator to page a rheumatologist and, luckily, someone called us back. A resident doctor listened to what I had been going through – the months of pain and my lack of mobility – and spoke with Dr. Tucker. Within an hour, we were told to come to the hospital immediately and I was admitted. We packed a bag thinking we would be there for the day, but ended up calling BCCH home for almost a month. It was during this time that the diagnosis journey began.

My condition worsened in hospital to the point where I could not look after my own daily needs and required help from my mom and the nurses. I eventually needed a wheelchair to get around. I was seen almost daily by various teams that could not pinpoint what was causing my symptoms. They had to rule out a long list of conditions, so I saw many specialists and endured testing almost daily. Eventually, I had a muscle biopsy surgery, and the sample was sent to Toronto Sick Kids. A week later, they confirmed their suspicion: Juvenile Dermatomyositis.

As soon as I was released, I started treatment. I was prescribed 60 mg of prednisone daily and weekly methotrexate injections. It took weeks for me to be able to walk up my stairs and not need a wheelchair to get around. The medication began to improve my mobility, but the side effects were harsh. Being on high doses of Prednisone altered me profoundly. Prolonged high-dose steroids changed me physically, emotionally, and mentally. It took a year and a half to finally wean off and get some reprieve from the side effects of the drugs.

Years later, I am able to reflect on how all of these struggles have shaped who I am. I am now resilient, empathetic, and extremely driven. The challenges I faced pulled abilities out of me I didn’t know I possessed and shaped my perspective. My experiences have enabled me to become an advocate for teens going through diagnosis and treatment, and I am able to use the strength I found within myself to help others. Through my role as a Youth Ambassador for Cassie and Friends Society, I have an opportunity to support the creation of resources for newly diagnosed teens and bring hope and resilience to those around me.

In case you’re wondering, I still have my “down” days. But they are far outweighed by the “ups”. I snowboard. I give back to my community. I am headed to university this fall. I am okay.

And you will be too.

Join us at our Newly Diagnosed: The First 12 Months webinar happening on Tuesday, March 28 at 4:30pm PST / 7:30pm EST to hear directly from Sophie as we dive deep into the questions all families face when confronted with this new reality. Register here!