Kara

When I was ten years old, I had a seizure during my fifth grade class. I wasn't expecting it at all, no one was. My school called the ambulance and they brought me to the closest hospital. While I was in the truck, the EMT's tied my hands and feet down to the stretcher and held me down. I had stopped seizing at this point and I didn't know where I was. I kept saying in my head over and over again. "Please let it be a dream." When they tied my hands down I was scared and I just tried to break loose from the stretcher. When I got into the ER, I looked at my wrists and ankles and I had rug burn type marks. They hurt very badly. I talked to my Neurologist about this and he said, "I'm so sorry, they obviously had no idea how to handle a patient with a seizure disorder." I wish they knew that you should never tie a seizure patient down like that. It was the most mortifying experience of my life.
I didn't go to school for a week, I was so embarrassed. I was afraid the kids at school would make fun of me, and they did. It was hard for me because my life completely changed. It will never be the same. I used to have seizures frequently. My doctors kept looking for the right medications. I've been back and forth between many medications. Making the transition between medications has been the worst part about having epilepsy.
I'm controlled now. This medicine is finally working. I haven't had a seizure in almost 2 years. It will be 2 years in May. I'm so happy. I'm not ashamed of having epilepsy anymore. I know it's not my fault. I still ask "Why me God?" but for the most part I handle this condition very well.
I'm 17 now, I've been accepted at 3 colleges and I am following my dream to be a jazz singer and music educator. I want other kids to know, I understand. I understand how hard it is to have epilepsy. But, I want all the people, adults and children to know, It's going to be okay. Something will work, somehow, sometime... everything will be okay.
I can't say I will never have a seizure again. I probably will. But, it feels great to be seizure free.
.


« back

 

Epilepsy is the most common neurological disorder in children, often causing damage to the developing brain and causing premature loss of life. Sadly, public perception is that epilepsy is a benign condition that is easily treated, and this is why research efforts have lagged far behind where they should be, given the prevalence and devastation of epilepsy. I applaud the Leyden family for their courage in sharing their personal story. I know that by doing so they will help to raise awareness of the millions of other families who are also desperately seeking answers for their children.

Susan Axelrod - Founder of C.U.R.E.