In My Own Voice: Sophia’s Scoliosis Makes Her Stronger Physically and Mentally

Sophia Carbone is a 12-year-old who loves to play soccer, bake, swim and hang out with her friends. Her scoliosis diagnosis has helped shape who she is.

When Sophia was diagnosed with scoliosis two years ago, the curve in her spine was significant and required comprehensive management by a team of clinicians in order for her to have the best outcome — a healthy back for life. Today, due to her hard work with Schroth physical therapy, wearing a back brace, and meeting regularly with the Emerson Scoliosis team, her posture has noticeably improved. Going through the program has not only strengthened her back — she has gained mental toughness and confidence to help others with scoliosis conquer life’s challenges.

I was 10 when I was diagnosed with scoliosis. I did not know what scoliosis was or know anyone who had it. My mom found the Emerson Scoliosis Program after we went to another doctor where they did not explain a lot and focused on correcting the curve with surgery. At Emerson, the team is really there with me. They ask me questions, explain how I might feel and are helpful every step of the way.

Having scoliosis is a big change. You can do the things you usually do, but you need to wear a brace as much as possible, go to physical therapy (PT) appointments, and always be aware of your posture. It is a big commitment.

I see Dr. John Cahoy a few times a year for check ups. He taught me all about scoliosis and answers my questions. He is very easy to talk with. When I see him for appointments he measures the curve in my spine and reviews my recent x-rays.

I see Glen, the orthotist, several times a year. He customized my brace and can make adjustments to it as I grow. The brace is comfortable to wear under my clothes. Sometimes I forget that it is on. I can put it on and take it off on my own. I leave it in the nurse’s office at school during PE class or at my house when I play soccer. I wear the brace at least twenty hours every day.

I have been working with Hollie Elwood, one of the Schroth physical therapists who is part of the Emerson Scoliosis Program. She is really fun to work with and makes the exercises enjoyable and easy to do. Jenn is the scoliosis navigator who coordinates my care with my mom to make it easy to stay on top of everything.

I do Schroth PT exercises four times a week at home to build strength in my back and help reduce my curve. I am very busy with school, homework and soccer, but I make time to do them for about twenty minutes. I can see the progress I am making when I do the exercises so that is what keeps me going. I also attend a Schroth PT group class that Hollie runs. The class is helpful because everyone there has scoliosis and we learn from each other.

It takes a lot of courage to deal with scoliosis and avoid surgery by staying on top of it, wearing my brace and doing my Schroth exercises. I do not want surgery — that is not an option for me — so I am grateful for the opportunity to work with the Scoliosis Program. I have made a commitment to my body, and with the team’s support I am achieving the goal of strengthening my back and avoiding surgery.

Having scoliosis has given me more confidence because I have to deal with something that not a lot of people need to. I did not know what I was capable of until I was diagnosed. The program requires me to work hard. I am really proud of myself for putting in the effort and am grateful to the Emerson team for working with me and making it manageable. It is not the easiest or most comfortable thing to have, but it is my health and it is up to me to do the work to succeed.  

Sophia’s Top Tips for Those with Scoliosis

• Stay on top of your exercises and wear your brace as much as possible.
• Find other people with scoliosis to talk to and learn from.
• Change your habits to keep your back healthy.
• Research scoliosis to learn as much as you can and check with your scoliosis team to make sure the information is accurate. The Emerson Scoliosis Instagram site is useful; you can find it at Instagram.com/scoliosis_new_england.
• Know that your hard work will be worth it to have a healthy back for the rest of your life.

For more information about Emerson’s Scoliosis program, please visit emersonhospital.org/scoliosis or call 978-589-6880.