500 people are diagnosed with Scoliosis each day. Although it is an increasingly common condition, millions of families remain uninformed.
Symptoms can manifest in a variety of ways and while the physical effects of Scoliosis are complex and difficult to manage, the emotional aspects can be just as crippling.
The outward symptoms of Scoliosis develop in young boys and girls at a time when physical appearance can greatly impact self-esteem.
This deformity leads to shame in a world that praises beauty and treatment plans often ignore the emotional aspects of this complex condition.
Scoliosis not only affects the sufferer, but also their parents, teachers, and friends. Whether your child is diagnosed or not, it is important for parents to know the facts.
Q: What is Scoliosis?
Most people think Scoliosis is just a curvature of the spine, and when I was diagnosed, I thought that, too. What I learned, though, is that Scoliosis goes well beyond the curve and can impact the entire body. The spine is our center, the scaffolding that protects the spinal cord, which is the highway between the brain and the rest of the body. So if the spine is crooked, it has to impact how the whole body comes together, moves and functions. Through much of my life, I had symptoms that most parents wouldn’t have related to Scoliosis. I had migraines, TMJ, trouble metabolizing certain foods, knee problems, foot problems, menstrual issues, breathing issues. As my curve got worse, it felt like my whole body was breaking down. Individually, these medical issues don’t necessarily indicate Scoliosis. But combined, they represent a potential whole-body problem and can be symptoms.
Q: When I was a kid, I got screened for Scoliosis in school with the eye and ear screening? Does that happen anymore?
School screenings became fairly common around the 1970s and still occur today, although at much younger ages. Most schools now start screening at Kindergarten. Pediatricians are also screening as early as newborn exams. While Scoliosis used to predominantly impact young girls at puberty, that’s no longer the case. I recently met a second-grade boy who was diagnosed at birth. Because of the increased incidence of Scoliosis, parents also need to be on the lookout for signs, watching how their child sits, stands, crawls, walks and how their clothes fit.
There are also a number of people, like me, who pre-date school screenings and are finding out they have Scoliosis as adults. Because of the hormonal component to Scoliosis, it can worsen with pregnancy and menopause. So Moms who experience back problems after giving birth, as I did, should consider getting checked.
Q: Does every child with Scoliosis need intervention?
About 12 million people in the U.S. have Scoliosis, with 500 more diagnosed each day. For 15% of these people, there is an underlying disease that’s causing the curvature, like Multiple Sclerosis or Ehlers Danlos Syndrome, and they’re considered to have congenital or neurological Scoliosis. These patients definitely need intervention. The remaining 85% have idiopathic Scoliosis, which means we don’t know what causes it and we can’t cure it. Intervention with traditional treatments only addresses the most prominent symptom, the curvature.
Thankfully, some children diagnosed with Scoliosis have a mild curvature that never gets worse. This is why doctors tend to use a wait-and-see approach to treatment. Others, though, have a case that progresses quickly, causes complications, and requires treatment. Even children with mild cases can still experience related medical issues and can benefit from intervention.
When considering surgical treatments, waiting is definitely the best plan and any surgery should be a last resort. New non-invasive treatments, though, have had promising results, particularly with early intervention. With the wait-and-see approach, sometimes doctors and parents wait too long. Had I known about some of these non-invasive options when I was first diagnosed, it’s entirely possible I wouldn’t have needed surgery at all, let alone seven of them.
Q: What are some concerns for kids who have Scoliosis?
While the physical complications, related medical and orthopedic issues can be concerning enough, the emotional aspects are probably the most difficult to manage. We live in a world that praises beauty and expects perfection. Growing up looking different, not walking as gracefully or standing as tall and straight, can make kids with Scoliosis easy targets for bullies. In my new book, Being Grace: A Story for Children about Scoliosis, Grace the giraffe has Scoliosis and is bullied because of her crooked neck. But she learns to find value in her own differences and accept all of who she is. We try to teach our kids to be kind, tolerant and accepting of others who are different, but we don’t always show them how to be tolerant and accepting of themselves.
June Hyjek is an Author, Speaker, Wellness Coach and Scoliosis Patient and Advocate. Her books, meditations, and workshops offer hope and encouragement to people experiencing life’s challenges. She is the author of “Unexpected Grace: A Discovery of Healing through Surrender,” an inspirational story of her personal journey in dealing with Scoliosis, and a meditation CD, “Moving into Grace.” June’s new book, “Being Grace: A Story for Children about Scoliosis,” shares the emotional consequences of having Scoliosis through the eyes of Grace, a young giraffe who learns to accept the differences in herself, not just in others.
Contact her at 860-985-9850 or firstname.lastname@example.org