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Manalapan woman spreads awareness about epilepsy

Manalapan resident Stacey Chillemi, 33, understands the difficulties inherent in growing up with epilepsy.

Manalapan resident Stacey Chillemi, 33, understands the difficulties inherent in growing up with epilepsy.

Manalapan woman spreads awareness about epilepsy

Published in the Asbury Park Press 06/9/05

BY ALESHA WILLIAMS
STAFF WRITER

Manalapan resident Stacey Chillemi, 33, understands the difficulties inherent in growing up with epilepsy.

Near-death experiences in her early adulthood, such as having a seizure while driving, impressed upon Chillemi the seriousness of her condition.

"My fiance, now my husband, was in the car," Chillemi said. "I realized I could have hurt myself as well as him. I had to accept the fact that I had epilepsy and not hide it from anybody."

Chillemi said she turned to libraries and bookstores to search for answers to her questions about her disorder.

"At that time, all the books about epilepsy were written in medical terminology, so if you were not educated in the medical field, you had no idea what they were trying to explain," Chillemi said.

Chillemi said she published an article asking people with epilepsy to write to her with their stories. She received hundreds of letters from across the United States and Canada and interviewed about 400 people, she said.

"We were all going through the same issues and emotions," Chillemi said. "I learned, "Hey, I can't feel sorry for myself — I need to do something about it, and try to help others.' "

And so began Chillemi's career as an author, launched in 2000. She since has written eight books about epilepsy, about life and about love, including her latest, "Epilepsy and Pregnancy: What Every Woman Should Know," co-authored by Dr. Blanca Vasques (Demos), due to be published in 2005.

"Basically, in my books I try to focus on trying to help people understand first of all what the disorder is, how to accept it and teach the people in their lives to understand it so it doesn't tear a family apart, how to love themselves and get on with their lives so they can live a healthy and productive life with the disorder," Chillemi said.

In spite of living for 27 years with a condition that keeps some reclusive and anti-social, Chillemi has managed to live by those ideals. She volunteered as a mentor with the Epilepsy Foundation of New Jersey and in 2002 won the organization's Outstanding Volunteer Award. She is a featured speaker at schools, organizations and political events and also spoke before Congress with the Epilepsy Foundation in 2004 on behalf of people with epilepsy, she said.

Today, Chillemi lives in Manalapan with her husband Michael, 33, and three children, Michael, 6, Alexis, 4, and Anthony, 2, and said she often is touched by e-mails and letters from readers who say that her books have helped change their lives.

"It's hard to believe that something you wrote helped someone like that," Chillemi said. "It makes me feel very good to give people encouragement, hope, to help them realize that they are somebody — that they all have a meaning in life and just have to find that destination."

For more information about Chillemi's books, visit www.authorsden.com/staceydchillemi

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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