Epilepsy and education…coming out of the closet

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It starts in the playground. A kid has a seizure and everybody freaks out. Nobody knows what to do. Maybe not even the school nurse. Even though epilepsy first aid is a cinch.

It’s frightening to see a child seize and then, based on that fright, they think “I can’t deal with this.” Some people still think epilepsy is contagious!

But kids are very impressionable, and if we show them there’s no reason to treat someone differently because of a condition that is uncontrolled, it’s very helpful. They want to understand. They want to help. But first we must show them how.

Happily, most parents are vigilant, starting support groups, arranging fund-raising functions, bringing family, friends, and neighbors into the fray. How else will their child lead close to a “normal” life?

Yet, sadly enough, at a recent high school health fair I attended, not one person knew what to do if a person had a seizure. Some didn’t even know what epilepsy was! That’s scary…

That means educating everyone you can: parents, nurses, teachers, employers, colleagues, EMTs, hospital staff, police, firemen, public personnel, prison wardens (I’ve heard some very grim stories), judges and yes, legislators.

More frankness would, of course, improve conditions for all of us who have epilepsy. If more well-known people with epilepsy dared to stand up and talk about how they have achieved what they have — despite having epilepsy — it would help all those who live with the stigma of discrimination.

While many public figures with cancer are forthcoming about the illness, epilepsy has never found an icon like Michael J. Fox, whose openness about Parkinson’s disease helps raise tens of millions of dollars a year for research.

Yet, despite the number of people with epilepsy — the disorder affects more Americans than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined — epilepsy still carries the stigma of ignorance which hampers care, public recognition and the ability to raise money for research.

Even among the well-educated, people don’t like to talk about epilepsy!

“There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University. “At some level, our society needs to wake up and realize it’s just another neurologic disorder.”

What can we do? Be pro-active on every level. Get legislators to institute a public program which would include:

* More educational resources for schools and special resources for classrooms with students who have epilepsy to inform teachers and classmates…

* Funding for a public service education campaign…

* New guidelines for acceptance and/or denial of disability benefits for people diagnosed with epilepsy…

* Resources for the workplace, educating superiors, coworkers…

* Clarification and enforcement of ADA in regard to seizure disorders.

By informing the general population that seizures look more dangerous than they are, and that effective treatment makes seizures more unlikely to occur — one can hope that conditions will improve for those of us with epilepsy.

The bottom line? Life will always be full of challenges, whether it be epilepsy, cancer, heartache or whatnot. We cannot escape it, only deal with it.