Patient Stories

Hi, my name is Ava Lee, I am 17 years old, and I’m from Connecticut. I’m a visual artist and I love to work with colored pencils. My journey began when I was first diagnosed with scoliosis at nine years old. My scoliosis was initially S-shaped and very mild, so I was not prescribed any treatment. However, two years later, my scoliosis progressed further and I was prescribed a full-time day brace. I was instructed to wear the brace for eighteen hours a day, but I was entering my first year of middle school which was a frightening and awkward year. I was afraid of being seen with a brace in school and as a result, my mother and I sought out alternative options. I ended up wearing a Charleston night brace instead because it seemed like a less aggressive option and I could avoid being seen with a brace during school.

However, the bracing process grew to become more difficult during the school year. I tried to hide the fact that I had scoliosis and whenever my friends came over I would put my brace in my closet, under my bed, or in my mother’s room so no one would know I was wearing it. Whenever I had sleepovers with my friends, I refused to wear my brace, which was an issue because my scoliosis continued to progress. Looking back now, I wish I was more confident and less afraid of what others thought.

After two years of bracing therapy, my lumbar curve was 43 degrees and I needed surgery to correct my spine. I was scheduled to have my surgery the summer before my junior year at New York-Presbyterian Hospital by Dr. Lawrence Lenke. At first, this was extremely difficult for me to process.

My biggest fear about surgery was not the procedure or recovery, but the scar that I would have on my back. I was worried about the appearance of the scar and I was extremely self-conscious. However, my doctor connected me with another girl my age named Gabriella who completely changed my outlook on the surgery. She was able to answer all my questions about the recovery process and even offered to show me pictures of her scar and tips on how to take care of it. Gabriella was extremely supportive and most importantly she taught me how to be confident with my scar. Because of her, I was inspired to help other scoliosis patients because I wanted them to have the same support and kindness. This is why I love SSSF because it offers opportunities for patients with scoliosis to read about others’ stories and receive support.

Although somewhat difficult at times, my experience with scoliosis has given me a purpose and passion in life. I’ve learned to love my scar and I even chose a low-back dress that shows off my scar for prom this year. Most importantly, I’m using my experience with scoliosis to help others with this condition. I’m working on making the bracing process for young women more wearable and bearable. I started a nationwide design competition called emBrace to improve the existing patterns on scoliosis braces to make them more fashionable, so young women will wear them with confidence and for the prescribed duration. emBrace has received hundreds of entries and I’ve been able to create partnerships with organizations such as Curvy Girls, SSSF, Scolios-us to help magnify emBrace’s impact. emBrace is partnering with one of the nation’s largest orthopedic companies, Friddles, to create a new brace collection that showcases the winning designs, which will be chosen by an accomplished panel of judges featuring experts such as supermodel Emm Arruda, Dr. Lori Dolan, and the founder of Curvy Girls. I hope this will prevent other young women from making the same mistakes I did.

Additionally, I’ve found ways to use my art to spread awareness about scoliosis and promote body positivity for young women with this condition. Before having scoliosis, my art was extremely technically detailed but none of the pieces had any meaning and I was never able to explain my artistic vision. However, through my journey with scoliosis, I’ve been able to create pieces of art that express emotion and communicate my struggles with this condition. Currently, I’m creating an art gallery exhibition this summer called 43 degrees intended to promote body positivity for women with scoliosis.