POTTSTOWN PA – Fourteen-year-old Kylie Fulmer has suffered epileptic seizures since birth. Now a student at Pottsgrove Middle School, the daughter of Kevin and Vicki Fulmer of Pottstown PA, personally knows how difficult the nervous system disorder can be to cope with, and how equally difficult its recurrent convulsive seizures can be for someone else to witness.
Kylie Fulmer of Pottstown.
With advances in medicine, Kylie might someday be able to control the former. She’s determined to do something now, however, about the latter.
“I’d like other people to know that epilepsy doesn’t have to be a scary thing,” she says.
Fulmer is among thousands of volunteers nationwide promoting epilepsy awareness this Friday (March 26, 2010) in what will be the third annual “Purple Day,” an educational event sponsored by the non-profit Anita Kaufmann Foundation.
This event has been added to The Post calendar.
Kaufmann, a former attorney who specialized in legal recruitment, suffered from epilepsy later in life and died in 2003. The organization that bears her name is dedicated to eliminating stigmas and public misconceptions that often accompany the illness. Purple Day, started by a Canadian girl in 2008, is named for lavender, the color internationally associated with epilepsy.
Fulmer has officially been designated by the foundation as its Ambassador of Purple in greater Pottstown, and she’s taken to the task with vigor. When Purple Day dawns Friday, Kylie will be dressed in the color from head-to-toe, and spend a portion of her day distributing literature to fellow students and teachers, hanging epilepsy awareness posters, and handing out free purple cupcakes.
Purple cupcakes draw attention to the cause, according to The Anita Kaufmann Foundation.
No, there’s nothing magical about those treats, mom Vicki admits. They will draw attention, though, from the crowd Kylie wants most to reach … her peers and classmates who may someday watch her or someone else endure a seizure over which they have no control.
Epilepsy is usually attributed to abnormally excited electrical signals in the brain, according to the U.S. National Library of Medicine. It can cause a variety of reactions in affected individuals, ranging from simple staring spells or a loss of consciousness, to violent shaking or thrashing for several minutes. Epilepsy so far cannot be prevented, and only occasionally can be subdued by medication or surgery. It affects 3 million Americans, and 50 million people worldwide.
The severe nature of the illness caused people during centuries past to believe the bodies of epileptics were inhabited by demons or evil spirits. Those who suffered seizures were sometimes banned from clubs, salons or other gathering places; that kind of discrimination is what prompted Kaufmann’s advocacy.
To young people of Kylie’s age, the foundation’s website explains, watching a violent seizure without understanding its underlying cause can be a terrifying experience. Consequently, Fulmer is optimistic about the explanatory opportunities that Purple Day presents.
“I’ve already had people asking me about what Purple Day is, and why it’s being held,” she says. “Now I’m looking to see how many people wear purple to school.”
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