Miaya's Story!!

Hello! I am one of the volunteers at the Scoliosis Resource Centre. I invite you to email us your story to share with our community!

My name is Miaya, and I discovered I had scoliosis the way many do-through a late diagnosis found by a family member. My mom noticed a hump in my back when I bent over to tie my shoe. Concerned, we went to a clinic, where I was scheduled for an x-ray. The doctors mentioned it could be scoliosis or a mass in my lung, making that first appointment incredibly stressful. At the time, I was in seventh grade and had two classmates with scoliosis. Given the two possibilities, I suspected scoliosis, as I recalled experiencing back pain during the same activities that triggered pain in those students. My family also recalled complaints of back pain, which we had attributed to growing pains.

Once diagnosed, I was referred to SickKids for further evaluation. After EOS x-rays, MRIs, and a physical consult, I learned my scoliosis curve had already reached a surgical size. At 12, being told I would need spine surgery felt like my world was crashing down. Bracing was the next option, so I was fitted immediately. While wearing a brace came with challenges—discomfort, sleep issues, and unwanted attention from peers—I wore it consistently for a minimum of 20 hours a day, knowing it was my best chance to delay or avoid surgery.

Despite my efforts, my aggressive curve continued to progress, causing significant pain. As a dedicated student, missing school and activities was another challenge. I spent the beginning years of high school, teaching myself lessons and trying to study being wrapped in heating pads, A535, and in tears. I was very fortunate, that my parents were able to support me going to two massages and two osteopath appointments per week for relief.

When my family discovered Schroth Physiotherapy, we began travelling across Ontario every five weeks for intensive sessions with Andrea Lebel in Ottawa, while also following a daily at-home Schroth program. This was life-changing, allowing me to manage my pain and sparking a passion for helping others with scoliosis. Eventually, we moved to Ottawa for a semester so I could do a co-op with Andrea and follow the program consistently. However, despite daily physiotherapy and over two years of bracing, my curve progression did not halt. By 2018, I realized that if I wanted to pursue my dreams—becoming a physiotherapist and one day being a mom who could hold her children without pain—I needed surgery. The mental health toll of making this decision is one of the reasons I now volunteer as a peer mentor for scoliosis patients through the Scoliosis Resource Centre.

I remained on the waitlist for nearly two years before undergoing spinal fusion surgery in 2020, just days before aging out of the children’s hospital. Even at 17, the surgery was, to say the least, daunting, but I was fortunate to have an incredible team at SickKids and unwavering support from my family and healthcare professionals.

Now, four years post-operation, I have no pain, completed my undergraduate degree, and am continuing my education to become a physiotherapist. I advocate for scoliosis screening because early detection could have made noninvasive treatments more effective and reduced the challenges I faced. Research now supports bracing and PSSE physiotherapy when scoliosis is detected early, yet accessible preventive measures remain underutilized. The cost-effective, 30-second Adam's Forward Bend test is an easy assessment that could reduce emotional, physical, and financial burdens on patients and families in Canada. Screening would also reduce the financial burden that late diagnosis costs the healthcare system. I advocate for those who were not as fortunate, for improved preventive healthcare practices for the next generation of scoliosis patients, and for my future children, who will be screened annually to safeguard them from this critical gap in Canada's current preventive healthcare system.