When I was seven years old, my mother noticed something on my back. When I bent down, the right side of my back stayed higher, forming a small hump. My mom took me to a school nurse in my hometown in Finland. From there, we were directed to the local health care center, after which we got to go to the hospital to see a children’s physician. I was diagnosed with juvenile idiopathic scoliosis, a growing curvature in the spine. The curvature had bent to 30 degrees in a short time and because I was so young, a brace was a more suitable option than surgery.
My first ever brace – out of what was going to be ten eventually – was a straight sleeping brace. It didn’t keep my scoliosis from getting worse, and at the first 6-month check at the hospital, it was decided I needed to start wearing a combination of a straight day brace and an overcorrecting sleeping brace which actively pressured my curvature in the opposite direction, for 22 hours a day. This time it worked, and I continued with the strict combination over the years of fast adolescent growth. At the age of 12, I could let go of the day brace (to my big relief!) and continued wearing only the overcorrecting sleeping brace until when I was 16.
I had many questions in my head when the treatment started. Did the brace hurt? What if it didn’t work? What would my friends say at school? Could I continue my hobbies, like horseback riding? Luckily, my body got used to it quite quickly, but life with the brace wasn’t always pleasant. It made me look and feel clumsy, it made me sweat, and sometimes its pressure hurt. But I could continue with my hobbies and I learned to not notice the brace most of the time. There were moments when it was hard to see value in one day when I still had years to go, but those days were fortunately never too frequent and never too overwhelming. I learned to deal with the treatment with the brace and everything turned out fine.
At my last visit to the hospital, at 17 years old, my scoliosis curvature was below moderate 12°. Today I am 26 years old, and my scoliosis is 29°, meaning a mild bouncing back of the spine in the last 10 brace-free years. Despite the slight reversal and tough moments along the way, I can only be happy about my treatment. I’ve lived my life to the fullest and my scoliosis hasn’t prevented me from running a marathon, backpacking around Europe, or moving to live in another country. I feel gratitude towards my own younger self who found the motivation to commit to the brace, for the people around me who helped me in that, and for the quality care I had access to. My mom was my most valuable supporter, from sleeping next to me at the hospital to promising to buy me a horse after I finished the treatment to keep me motivated (I loved horses at 7).
The only thing I didn’t have but would have wished for, is knowing others in my situation. In almost ten years, I never met anyone to share my experiences, thoughts, and feelings. Knowing about others in the same situation (let alone meeting them!) would have been encouraging and surely helpful, for practical tips and motivation alike.
My mom and I wanted to do something about this, so after my treatment, we wrote down our experiences and learnings into a book together. Growing Up in a Brace was published first in Finnish, and in 2022 in English. Next to sharing our journey in the book, we wanted to discuss things like motivation, mental health, and parents’ experience, and share practical information about scoliosis – all things that we would have wanted to read when we were living with a brace. I believe it is also important to bring the parents’ and the family’s perspectives into the conversation, because they are also consumed by the disease in their own way and have a big role in providing support to the scoliosis patient. For me, my family’s encouraging and supportive attitude was key to helping me make sense of the treatment at seven years old. We hope that our book can offer one form of peer support for anyone affected by scoliosis, and, that way make their treatment a little bit easier.
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