For many of us who grew up in the ‘80s, scoliosis strikes fear in our hearts because it reminds us of Judy Blume’s “Deenie” or Joan Cusack’s character in the movie “Sixteen Candles.” We may have held our breath and said a prayer as we were examined for the condition at school, and we don’t want that added stress for our kids.

The good news is that most people with childhood scoliosis go on to live full, active lives. Stacy Lewis, a University of Arkansas alumna and pro golfer who ranked No. 1 in the LPGA, is spokesperson for a campaign led by the Scoliosis Research Society. She has worked hard to overcome the challenges she faced as a teen with scoliosis. Her story illustrates the possibilities for young people with scoliosis and confirms that the diagnosis is certainly not a life sentence.

Here’s what parents should know.

What is Scoliosis?

Simply defined, scoliosis is a rotational deformity of the backbone. Instead of forming a straight line, a spine with scoliosis curves, sometimes looks like a letter “C” or “S,” and has an asymmetric prominence when the child bends forward.

There are three primary types of scoliosis: idiopathic (unknown cause); congenital (born with the condition); and neuromuscular (any medical condition that affects the nerves and muscles can lead to scoliosis). By far, the most common form is adolescent idiopathic scoliosis, which is typically diagnosed between ages 11 and 16. “Sometimes the curves don’t show themselves until right before puberty, or sometimes during growth spurts in young men,” explains Dr. Kathryn McCarthy, a specialist in orthopaedic surgery of the spine at Arkansas Specialty Orthopaedics. “There is no real, true understanding of why it occurs. We’re now beginning to understand it on a genetic level—a diagnosis is 20 percent more likely in the child of someone who has scoliosis.”

Warning Signs

Unlike what many parents may have experienced, school screenings are no longer standard. “You cannot guarantee that this test will be performed in your child’s school. Most often, the diagnosis comes from the primary care physician,” says McCarthy.

Parents can look for visible indicators, including an uneven waistline, shoulders that are not level, a prominent scapula (wing bone), or the body being shifted off-center when looked at from behind.

If you suspect your child may have scoliosis, consult your family physician, pediatrician or orthopaedist first. Once the child is examined, an x-ray may be obtained, which will confirm the presence of a curvature. From there, the child usually is referred to a scoliosis specialist.

Treatment Plan

After a diagnosis, treatment options become top priority. McCarthy says braces are still very common and can help prevent surgical intervention. The Boston scoliosis brace is the traditional model—a rigid brace designed to hold the spine in place. “I recommend them without question. A brace can prevent further progression of curves that are 25 degrees in someone who still has a lot of growth,” McCarthy explains. A brace is not as beneficial for a 17-year-old, for example, as there is not a lot of growth left. McCarthy recommends her patients wear their braces 23 hours a day, with exceptions for activities like sports. “The worst thing a young person with scoliosis can do is stop being socially active,” she says.

The spine usually stops growing at the end of puberty, (typically age 14-15 for women and age 16 for men), and the brace is no longer necessary.

The vast majority of people with scoliosis do not need surgery. For the few that do end up having surgery, McCarthy says that “most of my patients are up and walking within one day of surgery. Within six weeks they are back in school. I have a patient who has returned to competitive cheerleading.”

With early detection and proper treatment, parents and doctors can help minimize the long-term impact of scoliosis. Says McCarthy: “We’re giving somebody the opportunity to live a very active, fulfilling life. They don’t miss a beat.”

The Straight Truth

According to the American Academy of Orthopaedic Surgeons, there are three primary types of scoliosis: idiopathic (unknown cause); congenital (born with the condition); and neuromuscular (any medical condition that affects the nerves and muscles can lead to scoliosis).

  • Idiopathic scoliosis is thought to be present in two to three percent of adolescents.
  • One in 500 of these will require active treatment.
  • Only one in 5,000 will have curves that progress to the degree where surgery is recommended.
  • Girls and boys are equally affected by small degrees of scoliosis.
  • Girls, however, are eight times more likely than boys to develop progressive curves.

For more information, visit Scoliosis Research Society, SRS.org, and IScoliosis.com.