A young dancer, diagnosed with scoliosis, learns to advocate for herself and build community

Maddy Welz always loved to dance. Even before she learned how to tie her own shoes, she was performing pliés and practicing tap steps. But her life changed when she was diagnosed with scoliosis at the age of 14.

Caught during a scoliosis screening at school, the diagnosis was unexpected. “We were really surprised because I had shown no signs of it before,” said Welz, who’s now 16 years old and lives with her family in Boston. After she was referred to an orthopedic surgeon, she found out that she had a moderate scoliosis curve of 45 degrees, which meant that she was recommended to wear a brace to slow the growth of her curve until she reaches skeletal maturity.

Welz started her freshman year of high school wearing a back brace for 18 hours a day. She began to experience extreme pain that hurt her ribs and she began to distance herself from dance, family, and friends. “I spent a lot of hours at the nurse’s office just going back and forth, taking it off, putting it on, laying down after taking off my brace. It felt isolating, and I felt alone at my school,” she told STAT.

After months of being in pain, Welz pushed to get surgery to permanently straighten her spine this past summer. Her dad says that getting the surgery shaped Welz into a more resilient and tough girl. “Going through this journey and advocating for herself — especially as a teenage girl — helped her overcome so many challenges and cope with her anxiety,” he said.

Now, she still experiences pain — with some days worse than others — but she is back to dancing and going to school. STAT spoke to Welz about wearing a brace, learning self-advocacy as a young patient, and what helped her cope throughout her diagnosis. This interview has been edited for brevity and clarity.

When were you diagnosed with scoliosis?

It was the end of eighth grade and the school nurse was checking everyone for scoliosis. After the nurse checked my back, she messaged my mom and said that she was concerned with me having scoliosis. Both of my parents were really surprised because I had shown no signs of it before, especially during my yearly physicals. My mom then called my pediatrician and then at my next physical, my doctor saw my back and sent me to get X-rays.

After my doctor read the X-rays, he was like “Whoa, that’s worse than I thought” and sent me to an orthopedic surgeon. It was then at the surgeon’s office where I was diagnosed with moderate scoliosis, given my curve being 45 degrees. It was really scary being diagnosed since scoliosis was the biggest thing that happened to me medically.

What was it like wearing a brace in high school?

I was given a Boston brace and started wearing it during the beginning of my freshman year of high school. I felt alone being the only girl in high school who was wearing a back brace, so I often sought to hide it. Only my teachers, the school nurse, and my best friend knew about it. They were super helpful with my care and I would even sometimes go to the nurse’s office to take off my brace if I needed to.

I used to really like wearing fitted clothes, but in order to hide my brace, I started wearing oversized, baggy clothes. I also had to stop some of the activities I enjoyed doing, such as dancing. I had been dancing for years — ballet, jazz, contemporary, and lyrical. I remember being really excited about the dance tryouts at my high school to possibly enter the team as a freshman, but I ended up skipping it as I couldn’t dance in a brace. It really left me feeling anxious and depressed.

Why did you ultimately decide to get surgery to fix the curvature in your spine?

For the first three months, I would wear my brace for 18 hours and the pain would get unbearable sometimes. My surgeon had told me that when I first start wearing it, my body will adjust to it, and it may feel a bit uncomfortable. However, after a few weeks, I was still experiencing pain that spread throughout my entire body. I brought it up to my surgeon and he said that I wasn’t supposed to experience pain like that with the brace on.

Over the course of three months, my surgeon recommended that I wear the brace for 12 hours instead of 18. I started advocating for myself and amplifying that I was experiencing pain so my medical team could find a solution. I even had my orthotist adjust the brace, but he wasn’t able to shave the pads that were compressing my lower back. At that moment, I realized that I couldn’t continuously wear the brace for years because the pain was escalating over time.

It was then, after six months of wearing the brace, that I started asking about spinal fusion surgery to permanently correct my spine. My surgeon said that I would be close to needing it, and so I started researching it in the hope that it would permanently fix my pain. Given the nature of this surgery, I ultimately decided to go with it this past June. I had it over the summer, so I would be able to recover and attend school in the fall. I was so ready for the surgery — my only two requirements was that it wouldn’t interfere with my dance recital and plans to see Taylor Swift over the summer. [Editor’s note: Welz had returned to dance classes when she began wearing the brace 12 hours a day, removing it for the duration of the class.]

What helped you cope as you were going through your diagnosis?

At the brace office, my mom saw a teddy bear with a curvy spine and back brace and bought it for me. It is a Higgy Bear – a stuffed animal that has scoliosis. I later learned that this company actually hosts teen support groups for patients with scoliosis, which I started joining in an effort to connect with community members who were struggling like me. These biweekly virtual meetings were super helpful as I was able to connect with Lauren Higginson, the founder of this business, and other teens with scoliosis who were going through some of the same things I was going through.

One of the special moments was when one of the girls from Florida sent me a gift basket in my days prior to surgery with some essentials that would be helpful to me in the hospital. She already had a successful surgery and wanted to help me feel supported while I went through this surgery alone in Boston. It was a powerful reminder that there are people out there who went through what I am going through and care for me.

How is it like living with scoliosis now?

I am currently five months post-op and still in some pain. Some days are better than others, where I am able to go to dance practice and perform, while others are painful and I have to lay in bed. I am still in physical therapy and am learning how to regain strength in my core and back as I perform my daily activities. I think I have come to terms with the fact that there will be things I can never do, especially in regards to dance techniques, but I am learning to cope as each day goes by.

How has your experience in the hospital inspired you with your future career goal?

One of the most inspiring things I got to witness in the hospital was the work of a child life specialist. When I was preparing for my surgery, they set up a dramatization of a spinal fusion surgery on Zoom where they spoke about everything from pre-op to post-op so I knew what to expect. Even at the hospital, they attended to my needs and spoke about all the medical procedures in a very accessible manner while I was inpatient for three nights.

My surgery went great. I had a dance recital in the week leading up to my surgery and it was quite bittersweet, coupled with the excitement that I would be out of pain post the procedure. There was also uncertainty throughout this whole process about what would happen in this next chapter, but I am so grateful for my family, friends, and medical team who helped me power through. I now aspire to pursue being a child life specialist myself, so I can help other kids in the hospital and give them a sense of hope.

“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.

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STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.