As soon as someone outside of my new Early Onset Scoliosis Support Family learns my daughter has EOS, they almost always tell me how they know someone with scoliosis. Which isn’t surprising, one in forty people have some form of scoliosis. The key words there are some form.
Most people don’t understand how vastly different Early Onset is from scoliosis that develops in adolescents (the most common form) and adults. Heck I didn’t at first either; the first place I went when we got the diagnosis was The Scoliosis Research Society of the US; which in my opinion is an extremely disappointing organization. The majority of the information they have on EOS is INACCURATE or very outdated. It took me awhile to learn that because why would anyone question an organization that large and with that much authority? It’s an embarrassment and is a huge disservice to patients with EOS and their families looking for information. Much of the information they have on Congenital Scoliosis is also outdated and inaccurate.
But I digress… Why is early onset scoliosis so different from the other forms (and I’m not even getting into where Congenital Scoliosis fits in all of this)? To put it simply…it’s the most difficult orthopedic condition to treat in children. It’s also has the potential to be fatal. When a curvature over 20 degrees develops in the spine of an infant that is naturally growing at rapid speeds it going to get worse and can impact heart and lung development. Surgery at such a young age will also negatively impact the overall growth of the spine and child not to mention heart and lung development. These things generally cannot be said to the same degree when speaking of scoliosis in adolescents and adults.
The seriousness and vast difference is in part why I wish EOS had some other name. Because everyone knows someone with scoliosis, again, it occurs in one in forty people, and the large numbers of those are living with mild forms and are able to manage their scoliosis and that’s what people often associate scoliosis with.
I’m just a mom who is trying to take this diagnosis we were handed and find ways to educate the world, help others along their journey with this diagnosis, and ultimately make a difference. Knowledge is power. Now if only the Scoliosis Research Society could get on board too.