Scoliosis is quite common and often discussed; however, many still have questions about this condition, including what exactly it is. Teen magazine had the chance to speak to the National Scoliosis Foundation to talk about what exactly scoliosis is, how the foundation came about, and how to get involved.
Many thanks to Joe O’Brien, President and CEO of the National Scoliosis Foundation, for having this conversation with me!
The National Scoliosis Foundation (NSF) is a patient-led, nonprofit organization dedicated since 1976 to helping children, parents, adults, and healthcare providers understand the complexities of spinal deformities. such as scoliosis.
-The National Scoliosis Foundation, scoliosis.org
About scoliosis
What exactly is the condition of scoliosis?
Traditionally, scoliosis is defined as a lateral curvature of the spine measuring more than 10 degrees. However, we know that scoliosis is a three-dimensional misalignment, in which the spine bends and twists, often causing a misshapen rib cage, sloping shoulders, and/or uneven hips.
Most cases are mild and these symptoms may or may not get worse, while in moderate cases these symptoms may become painful and in more severe cases the heart and lungs may also be affected.
Who Gets Scoliosis?
Scoliosis affects 2-3% of the population, or about 1 in 40 otherwise healthy children. Scoliosis primarily affects girls, with a ratio of approximately four girls to one boy. Scoliosis affects all age groups equally, from infants to the elderly, however, most cases occur in adolescents between the ages of 10 and 16. Therefore, the most common patient with scoliosis is a teenage girl.
What causes scoliosis?
There are several known causes of scoliosis, such as congenital (malformation of the spine during development), neuromuscular (ie cerebral palsy) and syndromic (muscular dystrophy, Marfan syndrome, etc.).
However, in most cases, scoliosis is idiopathic, meaning we don’t know the cause. We know genetics play a role, but scoliosis is a complex condition with many contributing factors, which is why most cases are classified as adolescent idiopathic scoliosis (AIS).
image not affiliated with NSF
How to treat scoliosis?
Treatment for AIS depends on the size of the curve, residual spinal growth, and whether or not the curve continues to worsen. If caught early, nonoperative treatment, such as scoliosis-specific exercises and/or a brace, can prevent the curve from progressing to the point where surgery is needed. Basically, if we can keep the curve below thirty degrees until the adolescent reaches skeletal maturity, then the risk of continued progression into adulthood becomes minimal.
If the curve approaches 50 degrees, scoliosis fusion surgery can very well correct the curve and allow most patients to live a good quality of life. Two emerging technologies, tethering and ApiFix, prevent spinal fusion and help maintain more normal spinal function.
The National Scoliosis Foundation
How was the National Scoliosis Foundation created?
Laura Gowen, our beloved founder, sponsored an Ethiopian boy in a wheelchair named Atlabachew Tedla, when secondary education was closed due to a civil war. After a physical exam at Boston Children’s Hospital, Dr. Ted Riseborough informed Laura that Atlabachew’s suspected polio was actually a 145 degree scoliotic curve!
Dr. Riseborough performed two scoliosis fusion surgeries for free, and Atlabachew was then able to walk and graduated from high school and college. After the surgeries, Dr. Riseborough asked Laura Gowen to start a patient-led organization to raise awareness of scoliosis and advocate for early detection and treatment. He believed bracing worked, but at the time patients came to his office with curves over 75 degrees, which was far too late to do anything other than surgery. Laura (Bunny) Gowen kept her word and in 1976 founded the National Scoliosis Foundation.
image not affiliated with NSF
What is the mission of the National Scoliosis Foundation?
Our mission is to help improve the lives of children and families affected by scoliosis by raising awareness, advocating for early detection through screening, and educating/encouraging/empowering the patient and their family.
What are some of the services and programs for people affected by scoliosis?
We provide information and support to patients and families in several ways, including group conferences, webinars, virtual support meetings, snail mail and one-on-one phone calls. We also have an online forum community with approximately 10,000 registered members.
How does the National Scoliosis Foundation raise awareness?
We raise awareness in a variety of ways such as conferences, health fairs, TV and radio shows, websites, social media, classroom and parent group presentations, announcements of interest public, etc.
In 2008 we launched a grassroots campaign known as June is Scoliosis Awareness Month which was very successful and generated awareness around the world.
image not affiliated with NSF
What would be the greatest accomplishment of the National Scoliosis Foundation?
This year we celebrate our 45th anniversary! We have made many accomplishments during this time, including helping millions of children get screened for scoliosis and working with the medical and scientific community to ensure they have access to optimal care.
What makes you most proud to be with this organization?
I am proud that we have kept the needs of scoliosis patients at the forefront of researchers and health care providers and maintained a focus on respecting and valuing the person and their spine.
How you can get involved
As a magazine focused on teens and young adults, are there ways Gen Z can get involved with the National Scoliosis Foundation?
Absolutely! We see Gen Z as creative, skilled and caring young people who want to make a difference in this world.
We salute their passion and enthusiasm and invite them to use their technical skills and social media awareness to help us create global awareness of scoliosis and ensure that all children, regardless of race, creed , their socio-economic status and geographic location, are able to be screened for scoliosis and receive the lowest cost optimal treatments possible.
image not affiliated with NSF
More information
Thanks for the interview, National Scoliosis Foundation! For more information, please visit scoliosis.org.
