I was diagnosed with scoliosis at the age of 11. At that time, I had no idea how big of an impact it would make on my life. I went to two different doctors to verify that it was true, and to get different opinions about bracing. My family decided that a Rigo Cheneau brace would be the best option for me and most effective with my curve. It was recommended that we go to National Scoliosis Center, and I started at the Fairfax location so I could be a part of making my first brace. Looking back, that experience made the process better even though there were many tears at that first appointment. My parents, and my orthotist, Kristian, really encouraged me to work through things. They provided suggestions and they were patient and encouraging. They were even able to make tweaks and adjustments to my brace to help me be more comfortable.
Initially, school was a big challenge when I got my brace. It was uncomfortable at first to carry a backpack with my brace under my shoulders and to sit in a hard chair all day. Some kids would give me weird looks if they saw my brace, but my friends always got me through it by being supportive. My friends always made me laugh by trying on my brace and saying, “How can you wear this?” This made me realize that after getting used to wearing the brace, I didn’t even notice it when I wore it. I even did a presentation for my fifth-grade class and showed them my X-rays and a miniature version of my brace that Kristian made for my American Girl Doll. I think that helped my class to better understand why I wore a brace.
Sports were challenging at first, as I couldn’t wear it while I was playing and never wanted to put it back on after I was done. I always enjoyed the time that I had playing sports because it gave me a break from the brace. Thankfully, the brace never affected my activities, I continued to play basketball and lacrosse.
I wore my brace over my clothes for the first time on the first day of seventh grade and I think it made a huge difference for my confidence. After that first day, I was constantly wearing my brace out and I started to embrace my brace. I decorated my brace with inspirational stickers and had my friends sign it with a permanent marker to show that I wasn’t embarrassed.
For me, the hardest thing about wearing a brace was transitioning to a new brace. It took adjustments and multiple appointments every time, but with support from so many people, I always managed to get comfortable in my new brace. After wearing a brace for three years I have now been switched to nighttime bracing. This December I will be completely done bracing and it will be the best Christmas present I get.
This experience of bracing has impacted my life so much and although it was not easy, I think it made me a better person. My curves have decreased, and I have avoided the need for surgery. I have become a mentor for several other young kids who are starting with bracing, and I have learned that the hard work and time invested was well worth it. After my journey with scoliosis, I hope to become an orthotist. I want to help young kids and tell them about my experience. I think having an orthotist who has been through what they are facing will be helpful to kids because they know I can relate to them and understand the challenges.
Overall, it was a tough experience, but I had great support from my friends, family, doctors and the team at National Scoliosis Center (who I would recommend to anyone that needs a brace) and I wouldn’t change the experience for the world.
-Lily Jones
