Thoughts From Jordyn's Parents
When we first brought Jordyn to Children’s Hospital to meet with a Neurologist, I remember looking around the room, holding Jordyn tightly and wondering what the other families were thinking. Six months later, in the same room, I could look at the other families and tell how long they had been dealing with Epilepsy: years, months or days. That deer in the headlights look of a first timer is saddening. I can remember wondering what a possible Epilepsy diagnosis might mean to our family: medications, surgery, learning problems, social stigma.
We blindly went through brain surgery. Is that possible: handing a five year old over to a surgeon to remove part of her brain? We did not know enough about Epilepsy nor the surgery to understand, yet we trusted the doctors and on we went. The same happened when the doctors implanted the Vagus Nerve Stimulator (VNS) in Jordyn. We don’t even remember the type of seizures Jordyn was diagnosed with having.
Four and a half years in, eleven medications (one not FDA approved), brain surgery and an unsuccessful VNS, we found Dr Thiele. I remember her saying she needed to treat the patient: defined as the epileptic, her family AND the community. Wow. We had been treating a seizure disorder, now someone wants to treat our daughter, us and her school! We had found our Doctor.
When Jordyn was first diagnosed, we had absolutely no words to explain to our friends and family exactly with what it was we were dealing. It was two years before my mother saw her granddaughter have a seizure. If she had never seen it, she still might not understand. The opportunity to work with Dr. Thiele to develop an educational piece, that anyone touched by Epilepsy can use to learn about the disease, was too powerful to pass up. We have been in countless hospitals always finding literature about Cancer, Asthma and Diabetes; but never anything about Epilepsy. We watch television ads from companies touting medicine to cure baldness or whiten your teeth. We have never seen anything about Epilepsy. Watching someone have a seizure in a crowd is like watching people run from a bomb. Why is Epilepsy the Leprosy of our times? It is hidden disease, because proper resources have not been available to educate patients, family and the community about the disease.