By Leah Stoltz and Silas Kelly, MSW-S
What is Scoliosis?
Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty, according to the Mayo Clinic. While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.
Most cases of scoliosis are mild, but severe scoliosis can be disabling. An especially severe spinal curve can reduce the amount of space within the chest, making it difficult for the lungs to function properly.
Children who have mild scoliosis are monitored closely, usually with X-rays, to see if the curve is getting worse. In many cases, no treatment is necessary. Some children will need to wear a brace to stop the curve from worsening. Others may need surgery to straighten severe cases of scoliosis.
If a scoliosis curve gets worse, the spine will also rotate or twist, in addition to curving side to side. This causes the ribs on one side of the body to stick out farther than on the other side. Severe scoliosis can cause back pain and difficulty breathing.
Below is an interview with Leah Stoltz, President and Founder of Curvy Girls of Long Island, a scoliosis support group, and social work student Silas Kelly. Mr. Kelly attends the Adelphi University School of Social Work and he worked with Ms. Stolz to promote support for scoliosis patients by producing a radio talk show segment on scolisis for Z100 radio show in New York broadcast in July 2011.
Ms. Stoltz, you lead Curvy Girls a support group for women with scoliosis. Can you describe your own experience with the condition?
When I was first diagnosed with scoliosis the summer after sixth grade, I was put into a hard plastic brace that I wore around my torso twenty-three hours a day, seven days a week to stop my curve from progressing. Despite wearing three different braces for the next two-and-a-half years, my spine continued to curve to the point that I had to have spinal fusion surgery when I was 14.
On June 29, 2007, I walked into Good Samaritan Hospital and my vertebrae were fused from T5 through L4. That was four years ago. And while I rarely remember having a scar running down my entire back, I always take pride in showing it off. It’s like a battle wound. People didn’t know what I was going through emotionally all those years, but now they can see my scar. That people get.
How does your support group help participants?
With a statistic of one in forty kids being diagnosed with scoliosis, it was weird to me that I knew no one else with this disorder. In fact, when I did search for other people to talk to, all I found were groups of adults. I knew I needed to talk to other girls who could understand what I was going through — the struggle with finding the right clothes, explaining your situation to friends, doctor’s appointments, facing the possibility of major spine surgery, and just dealing with the fact that my spine was crooked.
So a little over a year after being diagnosed, I held my first scoliosis support group meeting at my house with four other girls from surrounding areas. We talked about everything from the dreaded plastic thing, what clothing worked to conceal the brace and all the things that typical teenagers can relate to. Basically, we gave each other the sense that we are not alone.
Six years later, we are still holding monthly meetings in my house and have expanded to twenty groups across the country. It has become a network of support and friendship with the goal of eliminating the idea that scoliosis is something one must face by oneself.
Ms. Stoltz, how can social workers help young women like you?
There are two parts to scoliosis: the obvious physical part that the doctors look at, but the second is completely ignored — the emotional struggle. We are given a brace to fix the physical aspect, but this group- these girls’ love and support for each other- is the prescription and remedy for the emotional part.
Professionals working with girls with scoliosis need to understand that scoliosis makes us different at a time when all we want to do is fit in. When we are with other kids like ourselves, we do fit in. So the best thing a professional can do is to make sure that we have other kids like us to talk to.
It is also important to understand that we are dealing with feeling a sense of loss of control over our bodies, as well as having to wear an embarrassing brace. We bear a secret unless we can tell our friends but many of us are too ashamed to share. You need to help us find our voice to speak up at doctor visits and to our peers.
Mr. Kelly, how were you able to use your social work skills and professional background to help Ms. Stolz?
Social workers, due to the nature of their work, should always have a wealth of resources to tap into. They can help scoliosis over-comers by connecting them with the right resources at the right time. Basically, it is the social worker’s job to know which one of their resources will be most helpful, and to have a good sense of timing about when to connect a scoliosis over-comer.
The social worker must be a conduit to make individuals dealing with scoliosis aware of the support entities that are available. This in turn will let them know that they are not alone and they in turn can reach out to others which makes the support network grow.
In this particular case, as a social work student I recognized an outstanding effort from an over comer, Leah Stoltz. I realized that her story needed to be told, and that by providing her with a vehicle to tell her story and the story of the “Curvy Girls” that this in turn would benefit so many other individuals.
Therefore, I used the resources I had (producer experience, outreach experience, media experience, and PR experience) to help spread the word and make it possible for even more people to be helped.
