Patient Stories

Sarah L

I was first diagnosed with scoliosis in 2015 when I was 13 years old. Getting ready for my 8th grade dance, my mom noticed that my dress no longer fit right by my shoulders, despite it fitting perfectly just a few months ago when I had purchased it. The next day, my mom looked at my shoulders and upon realizing they were uneven, took me to see a doctor. I still remember being so freaked out when my x-ray came on the screen showing I had scoliosis. I was diagnosed with moderate scoliosis and was recommended to see a specialist. When I began seeing the specialist, my thoracic curve measured around 40 degrees and my lumbar curve around 30. That first appointment was also the first time I was told I might need surgery, a thought that was terrifying for me. To prevent this surgery, I wore a nighttime brace for about 2 years to prevent my curve from increasing while I was still growing. As uncomfortable and even painful as the brace was, it was way better than surgery. I continued to see the specialist to monitor my curve and see if the brace was working. As a dancer my whole life, the thought of a spinal fusion was devastating, I would lose the flexibility I needed to continue dancing at the level I was currently at.

After 2 years, I stopped growing and was able to retire the brace, an exciting appointment indeed! For the rest of high school, my doctor continued to monitor my curve, and while my curves had got slight worse, now around 45 degrees and 35 degrees respectively, I wasn’t experiencing any pain and I had stopped growing so both my doctor and I felt I could continue to have my back monitored and not perform the surgery. When I started college in 2019, things started to change. I began experiencing back pain that I never had in the past, to the point where I could not sit in a chair longer than 30 minutes before experiencing intense pain in my lower back. I informed my doctor and after an X-ray, it was revealed that my thoracic curve has increased to around 50 degrees. The fact that my curve had gotten worse rather quickly and that I was experiencing a lot of pain was concerning for both my doctor and I, so he recommended I started physical therapy right away while we continued to monitor my back. After a little over 2 months of PT, I was still experiencing tremendous back pain and surgery became inevitable. I was terrified. I had been dreading this for the past 5 years. I am beyond grateful for my doctor for working with me to create a surgery plan that would correct my scoliosis and allow me to keep my flexibility for dance. As my lumbar curve was still in the mid-30s, my doctor felt confident that he could operate on the thoracic region of my spine without touching my lower back. On May 29th this past year, I finally went in for surgery. I was scared beyond belief but confident in the procedure and excited to be living without pain and with flexibility! The fusion brought my thoracic curve to around 15 degrees, and my lumbar curve naturally corrected itself to be around the same. Just a few months later, I am back in the game! I am back to my normal self, dancing around in my room and with the dance organization at school and working hard to stay in shape. I am beyond grateful for my doctor who worked with me to ensure my feelings were considered and put first in every part of the treatment process.

In 2019, I was given a once and a lifetime opportunity to advocate for scoliosis. In June of 2019, I became Miss New York’s Outstanding Teen in the Miss America Organization where I had the opportunity to create The Curveball Project to advocate for scoliosis. I had the opportunity to speak at several schools in New York, with students and parents, educating on the condition and the importance of early detection. I was able to run a social media campaign focused on awareness of the condition and getting in touch with other people with scoliosis. I also had the opportunity to make connections with scoliosis advocacy groups, and even organized and hosted a dance class fundraiser where I raised $500 for the National Scoliosis Foundation. While my year as a titleholder is over, I am looking forward to continuing advocating for scoliosis as a patient mentor for Setting Scoliosis Straight and building connections with the inspiring people of the scoliosis community. Scoliosis has certainly not been the easiest. There were times of great fear, pain, and frustration, but there were also times of resilience, hope, and inspiration. Getting to know and talk with other scoliosis patients made me hopeful, the fear of surgery made me work even harder as a dancer as I knew I might not always be able to dance the same, and understanding what it’s like to have scoliosis pushed me to use resources and opportunities to advocate for this condition. Having scoliosis has been scary, but when life threw me this curveball, I made it my mission to knock it out of the park.


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