Editor’s note: Anya Troyer is a Champaign-Urbana 10th-grader who has scoliosis, the lateral bending and curving of the spine that if left untreated can significantly impact internal organs. She is a co-leader of the Central Illinois chapter of Curvy Girls, which has more than 100 support groups for girls with scoliosis around the world.
By Anya Troyer
I was diagnosed with scoliosis when I was only 12. Scoliosis is defined as the abnormal sideways curvature and rotation of the spine most often found in adolescent girls. While quite common — appearing in 1 of every 40 individuals — this can be a challenging diagnosis, especially for young girls. Depending on the severity of the curves, patients may need to wear a back brace or even undergo intense spinal surgery.
I had both. Once diagnosed I was quickly put into a Boston Back Brace, a hard plastic shell with padding designed to keep my specific curves from progressing. (If curves get too big, they can compromise vital internal organs such as the heart and lungs.) After wearing the brace for more than 18 hours every day for about a year, I received the devastating news that my curves had become severe enough that, despite the brace, I likely needed surgery. I had a spinal fusion surgery on May 10, 2018, under general anesthesia for almost seven hours, fusing the majority of my spine from T1 to L1. This surgery fuses vertebrae together with bone grafts, immobilizing them to prevent curvature and leaving two titanium rods and more than 20 screws in the spine.
Having scoliosis can be very distressing for young girls. Those with scoliosis must deal with the physical challenges that accompany a twisting spine, tight plastic wrapping their torso at all hours or metal rods forever inside. There can be daily pain and soreness, as well as new braces with digging edges, clothes that don’t fit right, poorly designed chairs, and other issues. Besides these physical hardships, it can also be especially exhausting mentally. Scoliosis can make girls different than their peers and this is quite isolating. Most adolescents are not facing difficult medical decisions — and the anxiety of a progressing medical condition — so it can seem impossible to get through it.
Girls with scoliosis often have no one to relate to, which makes them feel alone and scared, like no one understands. Curvy Girls Scoliosis Foundation was created by then-teen Leah Stoltz in New York in 2006 to help combat this. Curvy Girls now has more than 100 groups around the world and hosts monthly support groups for girls ages 6-18 to talk about their treatment and general experiences.
Although this is a group specifically for scoliosis it is not limited to that. Girls form connections and a support network to hold them up whenever they fall down, which leads to strong, vital friendships. For those who are too far from a group or are uncomfortable talking in person, Curvy Girls also has an online forum where girls can talk to hundreds of others like them any time of the day.
I joined the online forum in 2017 and started attending the Central Illinois group in 2018. Since then I have been an active member on the forum and became co-leader of the local group. Curvy Girls has immensely helped me and I am very grateful for all the work they do. The Central Illinois group is looking for new members so if you or a girl you know has scoliosis, email centralIL@curvygirlsscoliosis.com for more information.