At 13 years old I started experiencing a lot of back pain. My parents took me to have X-rays in St. Thomas in the Virgin Islands where I live ten months out of the year. The technicians diagnosed me with scoliosis as well as with spondylolisthesis which is a disc slippage in the spine that often comes along with scoliosis. They also told me that I had not one, but two curves. One was at 42 degrees.
Being diagnosed with scoliosis as an 8th grader was really difficult for me at first. I was surprised and confused. I had not even heard of scoliosis. I didn’t know what to expect and in St. Thomas they had very limited options for treating me.
My family and I decided to go to Johns Hopkins in Baltimore to determine what steps we should take to treat the scoliosis. We saw a pediatric orthopedist who immediately referred us to Luke Stikeleather at the National Scoliosis Center.
For a 13-year-old, getting a brace seemed like this ominous, scary procedure, but Luke and his staff did everything they could to diminish my anxiety. They actually made it really fun and interesting.
I feel so fortunate that Luke saw me the very same day we were referred and he went straight to work. He was an amazing help to me—even putting off a weekend trip to come in and help get my brace fitted. I couldn’t believe how much he was willing to let me be involved in the process. He let me pick out colors for the brace and showed me a behind the scenes look at how it would be built. It was actually really cool to be a part of it.
I wore the brace for about two years. To be honest, I was so self-conscious about it at first. The weather in St. Thomas is really hot and I live on a boat with my family, so it was a challenge in the beginning. There were certain situations such as working on the boat, on my dinghy, or going to the beach where it was difficult for the brace and me to coexist, but pretty soon I was able to work around any inconveniences it posed.
If I was to give advice to newly diagnosed patients, I would say that when you first start it is discouraging because it seems like it will go on forever, but it really doesn’t. At some point, you get used to it. The time really does pass more quickly than you think it will. I’m 17 now and I’ve been out of the brace for about a year-and-a-half. My curve is now at 18-19 degrees.
In the end, I am so grateful to the entire staff at National Scoliosis Center. Everyone was so dedicated and encouraging. They do everything they can to support their patients and families and make the journey as easy as possible. They made a scary situation such a positive experience for me.