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Patient Stories

Sofia Mu

I first learned that I had scoliosis following my 2019 diagnosis. Given the symptoms I had had for years, my parents and doctors had known that scoliosis was a possibility since I was born. As I grew they monitored me, but I was only ever made aware of my scoliosis the summer before 10th grade. In October of 2019, my visit to an orthopaedic surgeon confirmed their suspicions.

I remember the moment I got my X-rays back so vividly because I had never been made aware of what my spine looked like. My parents assured me that it wasn’t nearly as bad as I thought my scoliosis was, but I still couldn’t process it. My spine was curved in a perfect S-shape, barely a single vertebrae where it should have been. The realization that something was physically wrong with my body made me process it mentally even more. I shortly began to process the pain I had always experienced and realized it had to do with my scoliosis. My tolerance for standing became shorter, I noticed more pain when doing physical activities, and I began to pick apart the imperfections and imbalances of my body more than ever. Although receiving an explanation for my experience offered some closure, it almost exacerbated its effects in my head. One morning at rowing practice, I was standing with a couple of my teammates and somehow the topic of scoliosis was brought up. I remember mentioning that I was recently diagnosed with scoliosis, and pulled up my X-ray on my phone. The Championship Course at the River Thames had been drawn on the whiteboard of the exercise room, and my coach’s reaction was priceless. He looked at the X-ray, looked at the drawing, and then said my spine was in the shape of the racecourse. He definitely wasn’t wrong.

My journey with scoliosis has been complicated from the moment it began. Before I was even recommended to a specialist, I had been seeing a chiropractor for knee pain and my uneven hips. All the signs of having scoliosis were there, but the pieces were never put together. After my X-rays came back, I was measured to have scoliosis of the thoracolumbar spine convex to the right centered around T9-10, with Cobb’s angles from T7-T12 that measured 33 degrees. A 33 degree curvature means that my case is not severe enough to warrant surgery, which is as relieving as it was frustrating. Although I was relieved that I would not have to cope with the fear and anticipation of spinal fusion surgery, it was incredibly frustrating to learn that my condition has no real treatment options. I was scheduled for a check-up six months after my diagnosis for further consultation, but the pandemic left my appointment cancelled and my situation in limbo. I was forced to wait even longer to see how my condition would progress on its own. By the time a year had passed since my first appointment, I got new X-rays and met with the orthopaedic surgeon again. To my relief, my scoliosis had not gotten worse, but there was no improvement either. With bracing in such high demand and surgery being unnessecary, my moderate case of scoliosis was not severe enough to require deliberate treatment. The best advice anyone could give me for coping with my scoliosis was to simply live with it.

The hardest part of having scoliosis is dealing with the unpredictability of what I am experiencing, a struggle only exacerbated by the pandemic. Waiting for an opportunity to have my x-rays retaken and spine reassessed was simply frustrating. The helplessness of not knowing how my condition would progress and what limited treatment options were available left me with so little hope. As much as it is challenging to not let my condition define me, it is also incredibly easy to find support from those who can provide empathy, especially through foundations like Setting Scoliosis Straight. Being apart of a foundation that enables me to gain the support that I have been looking for, and offers the opportunity to give others that same privilege, is incredibly rewarding. I know that by raising awareness and supporting research for scoliosis, I will be able to make living with scoliosis better, whether it’s for myself or for those with scoliosis in the future.

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