It’s 2015 and Avital Harris is out on a walk with her family.
It’s a hot day. Too hot frankly, and she’s had about enough. Some combination of the heat and playful aggravation that only a little brother can elicit overwhelms her. She loses it.
“I took off my back brace and literally threw it as hard as I could into the woods,” Avital recounts while laughing. “I said, ‘You can get it,’ and walked away. It wasn’t my finest hour.”
Such behavior between a 13-year-old and a younger sibling is certainly not a novel concept, but more than teenage angst played a role in this equation. At the time, Avital had been recently diagnosed with scoliosis. She had received a brace to attempt to halt the increasing curvature of her spine, and while effective, it was cumbersome.
“It’s Minnesota in the summer,” Avital says. “You want to get out and enjoy the weather and sometimes having the brace made that a little harder to do. I didn’t always handle it very well.”
A Surprising Diagnosis
Adolescent idiopathic scoliosis (AIS) is by far the most common form of scoliosis, affecting children between ages 10 to 18; it’s found in as many as four in 100 adolescents. While heredity may be a factor, the cause of AIS is unknown. It can happen to any child.
Avital’s pediatrician discovered her scoliosis during a routine checkup and referred her to spine surgeon Tenner Guillaume, MD, at Gillette Children’s.
“When you’ve been healthy your whole life, it can be kind of jarring to have something like this happen to you,” Avital recalls. “When Dr. Guillaume said that my spine curvature came right up to the point of requiring surgery, I thought, ‘This can’t be happening.’ I was freaking out.”
Looking on the Bright Side
Despite the anxiety and fear that accompanied her diagnosis, Avital also felt relieved: Her pediatrician had caught her scoliosis just in time to avoid surgery. Instead, she could wear a back brace. “The process seemed a lot less scary and would allow me to remain flexible in the long-term so that I can play sports. My friend had a brace before, so I was more familiar with it.”
At Gillette, Avital was fitted with a brace after being casted in different standing positions to ensure comfort. The fun part came when she had the chance to pick a design for her brace. She opted for the New Orleans Saints logo, in honor of her father’s hometown. A week later, Avital received her brace and started wearing it 20 hours each day in an effort to correct her spine curvature.
The careful and comprehensive approach that addressed all of her possible treatment options made Avital’s experience at Gillette special, as she explains. “Everyone that I met made me feel like my opinion was important. They planned my treatment around what my goals were, and made sure all of my questions were answered before moving forward. It was really important to my doctors that I understood everything that was going on.”
As an added bonus, she says, “I learned a lot of new vocabulary from sitting in appointments with Dr. Guillaume and my parents.”
Avital’s experience at Gillette also altered her perspective on life. “Most of the patients I met were younger than me, and many of them had more serious conditions,” she explains. “They were working to overcome so many obstacles yet remained full of life and happiness. The courage I saw every day was inspiring; it encouraged me to always look on the bright side and not let my condition stop me from achieving my goals.”
‘It’s Not So Bad!’
Although going back to school wearing a brace wasn’t necessarily a concern for Avital because it would barely be noticeable underneath her clothes, she admits, “I wasn’t looking forward to explaining why my back was so hard when friends would hug me, or why I had such perfect posture all the time. I would wear huge sweaters so that nobody would be able to detect it.”
Getting used to sleeping in her brace soon began to feel natural for Avital, and the few hours a day that she didn’t need to wear it, she would go swimming. As she got used to wearing it every day, Avital describes it as more annoying than anything else. “My friends would try my brace on and tell me ‘It’s not so bad.’ But I’m sure they wouldn’t say that if they wore it for 20 hours a day, especially in the summer!”
Aside from the genuine curiosity from friends and family, Avital didn’t appreciate people feeling sorry for her because of her scoliosis. It didn’t feel right, because Avital knew she was going to be OK. She didn’t see herself any differently than others, and did not want to be treated as such.
No More Oversized Clothing
Besides being an active swimmer and a basketball and ultimate Frisbee player, Avital is also a young entrepreneur in-the-making. At just 15 years old she is already working on a business plan to develop a clothing line that will accommodate kids who wear braces. “Scoliosis is very common–a lot of people have to wear a brace, and I don’t think it’s fair for anyone to struggle to find clothing that fits and is still flattering,” she says.
After two years of wearing her brace nearly 24 hours a day, Avital’s Gillette team had happy news—she could begin to phase it out. She began with not wearing it to school, then only during sleep. Now, as she gets ready to enter her sophomore year of high school, Avital is excited that she doesn’t need to wear her brace anymore. The curvature in her spine that once reached 45 degrees now sits in the low 30s, and Avital is eager to transform her experience into change.
“I want kids who have scoliosis to know that they don’t need to feel afraid or ashamed about their brace and condition. I want them to know that even though committing to wearing a brace all the time is hard work, it will pay off and they will be just fine.”