As if puberty isn’t awkward enough, each year about 3 million new cases of scoliosis are diagnosed in the United States.
Scoliosis, the sideways curvature of the spine, shows up most often during growth spurts, usually when kids are between 10 and 15 years old. While the same number of boys and girls are diagnosed with minor idiopathic scoliosis, curves in girls are 10 times more likely to get worse and may need to be treated with braces.
Coming at a time when pre-teen girls are self-conscious about body image, the idea of wearing bulky braces can be especially daunting for a kid who just wants to be normal.
Enter Curvy Girls, a support group for girls with scoliosis.
Led by girls who share the same challenges and concerns, Curvy Girl members meet regularly in Richmond to talk about anything they’d like.
“It offers girls a comfortable and supportive environment to help each other carry on daily life with a brace,” says Jaime Gates, whose 12-year-old daughter, Ella, one of the group’s co-leaders. “Things like what do you wear under your clothing? How do you tie a shoe? They truly lead the meeting and Curvy Girls International (the parent organization) gives them the tools.”
Ella and co-leader Marissa, also 12, met at a Curvy Girls meeting in Norfolk and are patients at Powell Orthotics and Prosthetics, where orthotist Beth Martin customized their braces.
“The parents are in a separate room during Curvy Girl meetings, giving the girls a chance to talk freely,” explains Marissa’s mother, Shannon Wood. “That way the parents can talk about issues, bounce some ideas off each other and learn about new ways we can help.”
Signs of scoliosis
While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.
If you look at someone’s back, you’ll see that the spine runs straight down the middle. When a person has scoliosis, the backbone curves to the side. Anything that measures more than 10 degrees is considered scoliosis.
The most effective treatment is with a customized brace. There are a number of different rigid-back braces available that vary in how pressure is applied to the spine and ribs to prevent a scoliosis curve from progressing. Some braces require full-time wear, typically 16 or more hours a day, while others are worn at night while sleeping.
Given the impact of a brace on daily living, it’s helpful to have a support network for girls 8-18, Gates says.
“It’s a journey and every girl’s journey is different,” Gates says. “Everyone in the group is there to give advice, comfort and listen on that journey.”
“It’s a lot of responsibility for young children,” adds Wood. “When my daughter was first diagnosed, it was a tough period and very painful. She was the only kid in her school with a brace. We were searching for help. Through Curvy Girls she got to meet peers in a brace. It’s made a world of difference.”
Gates has two daughters with scoliosis. “They were on this little island together and no one to understand what they were going through,” she says. “And you truly don’t get it – how uncomfortable a brace can be, the pain, having to sleep in it and yet figure out how to let them be a kid. Just to have these girls together and able to talk privately about wearing braces is so wonderful.”
Gates and Wood also credit the support of Martin and the team at Powell. “They care about their people and they want them to have every opportunity,” Gates says.
They encourage parents to have their children checked out during regular pediatric visits. A simple bend-over test can catch a problem early, especially if scoliosis runs in the family.
“The sooner the better – in elementary school before growth spurts,” Wood says.
Curvy Girls meet monthly at different locations. To learn more, please send an email to Richmond@CurvyGirlsScoliosis.com