Yale Bulletin and Calendar

October 18-25, 1999Volume 28, Number 9

Yale freshman Brooke Lyons will sign copies of her book "Scoliosis: Ascending the Curve" at 7 p.m. on Oct. 25 at the Yale Bookstore.

Student seeks to raise awareness
about scoliosis through book

The question was asked innocently enough: "You have pretty bad scoliosis, don't you?"

The reply, however, was not quite as casual: "Scoliosis? What scoliosis?"

With that exchange, the then-14-year-old Brooke Lyons learned she had a debilitating condition that would mean giving up her lifelong dream of becoming a dancer.

Lyons, now a Yale freshman, has established new challenges for herself. She founded the Connecticut Scoliosis Association and chronicled her experience in a recently published book titled "Scoliosis: Ascending the Curve." She will sign copies of her work at the Yale Bookstore on Monday, Oct. 25, at 7 p.m.

Lyons' talent for dance was discovered early on and was developed at the prestigious Joffrey and Boston ballet schools. The day she learned she had scoliosis -- an abnormal curvature of the spine -- Lyons had muscle aches after intense dance rehearsals, and sought relief through a back massage. The masseuse, who was also a physiotherapist, detected the scoliosis immediately.

"I was at the Boston Ballet School and my parents had come up to visit me," says Lyons, a Connecticut native. "We couldn't believe what she was saying."

Lyons and her parents consulted a generic orthopedic surgeon, who took X-rays. "When the doctor posted the X-ray on the board, I said, 'Oh, my God! That's not my spine!'" recalls Lyons. "It looked like the letter 'S.' Spines are supposed to be straight."

Her family got second and third opinions from specialists. While the diagnosis was confirmed every time, each physician delivered a promising prognosis.

"They said that instead of immediate surgery, we could try an alternative method of treatment," Lyons remembers. "They suggested a back brace. My parents thought that treatment was more appropriate, so that's what we did."

Lyons wore the back brace beneath her clothes throughout the 9th grade -- a thick, hard-plastic apparatus that extended from under the arms to over the hips. The teenager didn't relish donning a brace "but I was religious about wearing it," Lyons says. "It helped hold the spine in place, and I thought, 'If I wear this, I won't have to have surgery.'"

The brace came off at the end of the school year, and Lyons still hoped for a career as a dancer. She spent the summer in France studying at Le Centre de Danse International. Back-muscle cramps persisted, however, and doctors monitoring her progress had to concede that, although the brace did prevent any additional spinal movement, her persisting 50-degree curvature meant that she eventually would need surgery to correct the progressive condition. Lyons is slated to undergo that surgery soon.

Scoliosis has no known cause, but it is thought to run in families. It affects roughly 2 percent of the population and is found in girls about eight times more than boys. Initial signs of the condition usually appear between the ages of 10 and 15, with symptoms that include one hip or shoulder higher than the other; a tilt to the side when standing; or a hump on the middle to lower back, visible when bending forward. Left untreated, scoliosis can slowly twist and rotate the spine, so that the chest and back become distorted. Depending on the severity of the condition, treatments range from exercises that strengthen muscles and stretch the spine, to surgical implantation of a steel rod to straighten the spine.

When she first learned of her scoliosis, a "shocked and confused" Lyons began researching her condition. "I just couldn't sit and do nothing," she says. "I wanted to find out more about what was happening to me." She called the Scoliosis Association, Inc., a national support group headquartered in Florida. She discovered that there was no chapter of the organization in Connecticut, so she got permission to start one. The Connecticut Scoliosis Association had its first meeting at the New Haven Lawn Club in the spring of 1996 with seven people. About 40 people now attend the monthly meetings.

While organizing the state chapter, Lyons was tapped by the national organization to become its national teen spokesperson. She began talking to people with questions and concerns about scoliosis on a toll-free hotline.

With little information about scoliosis readily available to the public, Lyons soon "saw the need for a book," she says. "My original goal was to help people feel less alone." She traveled to about half a dozen states interviewing people with scoliosis. Her book includes profiles of those people, who range from a 20-something Florida horse-farm owner with a "fighting spirit," to a man in his 50s with a 120-degree curvature who is just coming to grips with his condition.

"I've been very inspired by them," says Lyons, whose book also addresses medical and psychological aspects of scoliosis. "I knew how desperate and sad I felt when I learned I had scoliosis, and I wanted to help. I hope this book does that."

"Scoliosis: Ascending the Curve," published by New York-based M.Evans and Co., is currently available at the Yale Bookstore on Broadway. The Oct. 25 book signing is free and open to the public. For more information, call Don Levy at (203) 777-8440, ext. 165.

-- By Felicia Hunter


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