While many see October as a month dedicated to all things pumpkin flavored and the celebration of Halloween, it also brings to light a disability that affects more than 70,000 people in the United States alone, Spina Bifida. Spina Bifida, which means “split spine,” is a neural tube defect that occurs when a baby’s spinal column does not completely close. The severity of this defect differs between cases, ranging from having almost no disability or symptoms, to severe physical and mental disabilities.
Not all causes for spina bifida are known. More research is being done to learn about the genes and other factors that potentially cause this disorder. The goal of these studies is to eventually translate findings into even better treatment, care, and counseling for those whose lives are affected by Spina Bifida. As of right now, it is known that people with folate deficiencies, which is a natural form of vitamin B-9, have a higher risk of having a baby with Spina Bifida, or other neural tube defects. Other risks include: Having a family history of neural tube defects, some medications, and hyperthermia to name a few.
While not all people with Spina Bifida get the same complications, their conditions can be treated even though there is no cure for the defect itself. The malformation that Spina Bifida causes affects all of the nerves below it, causing nerve damage, loss of function, loss of sensation, and even paralysis. Whether or not the person can walk depends on the size and location of this malformation and how it is treated, but weak muscles in the legs and back often mean that a person needs leg braces, crutches, or a wheelchair.
There is no cure for Spina Bifida, however, people with the condition can still lead relatively normal lives, despite the obstacles they face. And while Spina Bifida can be related to severe mental disabilities, most people with Spina Bifida are just like you and me, and with a little help, we can make them feel just as normal. Every year Camp Guyasuta hosts one of Camp Firefly’s retreats for children and adults with Spina Bifida. During one of the days the campers are given the opportunity to experience a part of the high ropes course that would have otherwise been inaccessible to them, the zipline. As one of the staff members for the COPE course at Guyasuta, I can honestly say that there isn’t a day I look forward to more than when Camp Firefly is going to be there. My first day of work happened to be when they needed a few more hands on one of the days that those campers were going to be there, and while I was nervous, because I’m not always comfortable interacting with other people, I came to realize that they were the most genuine and grateful people I have ever met. Every experience, while frightening or exhilarating, was something that they held onto, because it wasn’t something that they were always capable of. They are the reason I remember to live in the moment, and appreciate what I have. Which is something I think we all need to be reminded of every once in a while. So go out and learn more about Spina Bifida, and how it affects those who have it. You might just find that everyone is not so different after all.