November is epilepsy awareness month, and as such 450,000 of the nearly 3 million diagnosed Americans are under the age of 17 and are forced to face their peers with their disorder! Did you know kids with epilepsy isolate themselves due to the fear of being bullied by their peers? Epilepsy is more common than Parkinson’s disease, multiple types of sclerosis autism, and cerebral palsy combined. How many people do you know who have epilepsy? It’s probably more than you thought. Did you know that before people have their first grand mal seizure they are often misdiagnosed with autism because our traits are similar, traits such as unusual tics and physical movement, blank stares, inattention or loss of focus, or unusual sensory experiences.

There is a stigma around epilepsy that it is contagious or a form of mental illness which is just not true at all. By definition epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. Epilepsy is neither contagious nor a mental illness as many people seem to believe.

The president of the Epilepsy Foundation, Eric Hargis, stated, “Teens that lacked information about epilepsy engaged in behaviors that were stigma-producing.” The stigma surrounding epilepsy has caused many teens and children to struggle with fitting in and self esteem issues because of the fear of getting socially isolated or picked on by their peers. They are in fact so scared of being made fun of or isolated that when surveyed nearly half said that they would not tell a friend or any of their peers that they have the disorder.

Rachel Thexton, a councilor at Great Bend High School stated, “I think that they are not aware. I would say that unless you know someone who has it and have been around them a lot I think that most people do not have general knowledge, both kids and adults.”

She was then asked how many people she knows that have had or currently have epilepsy to which she responded with, “My grandma had epilepsy and so from a little age I kinda knew about it like she always took her meds and everyone was just aware and I’ve had maybe 10 students in the 20 years I’ve been in education that I was aware of that had it.”

Mr. Wilson, vice principal at Great Bend High School said, “I wouldn’t say that there is a broad awareness but I do think that our students are becoming more aware. Because I think that when our students do have an episode I think that our other students are doing a better job of responding and doing a better job of being more aware.”

He was then asked if he has come across anyone who has had or currently has epilepsy to which he responded, “Absolutely yes, in three years here we have had a handful of students and, man, our students have done a great job communicating their needs with us and our staff, I think our nurse, Mrs. Young, does a fantastic job with responding as well.”

Mrs. Young was then asked what the protocol is for if a student or staff member were to have a seizure and she said, “So the main thing you want to focus on is keeping the individual safe and not harming themselves while they’re having a seizure. Typically you just let them have the seizure, some students have a 504 plan with different medications or a plan that you would follow if a seizure lasts for a certain amount of time.”

She stated, “Typically fairly unaware I mean, they probably know kind of what it is but not really know what they would need to do.”

The final question that everyone was asked was how common they thought that it was and all of them stated that they didn’t have a clue but that they assumed it would be pretty common. When they were told that it is more common than Parkinson’s disease, multiple types of sclerosis, autism, and cerebral palsy combined it was safe to say they were shocked.

So if you know someone with epilepsy, share something you learned with them from this article. Trust me they will be surprised and happy to know that you are interested in learning more about how they live everyday, don’t be afraid to ask them questions they will be more than happy to answer, and finally make sure not to make it their whole personality, we are more than our disorder.