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Stacey Chillemi

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Books by Stacey Chillemi
How Much Do You Really Know About Epilepsy
By Stacey Chillemi
Posted: Thursday, July 29, 2004
Last edited: Friday, November 19, 2004
This short story is rated "G" by the Author.
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Recent stories by Stacey Chillemi
· Stranger Lurking In the Shadows
· Tish’s Story
· Living With Epilepsy
· Trish’s Story
· Mike's Story
· Shirley's Story
· Jane Gillespie Story
           >> View all 30
Millions of people from all over the world suffer from a disorder called epilepsy. Five percent of the USA population has epilepsy. This disorder affects individuals from all age groups, from babies to elders. I suffer from epilepsy.

I developed the disorder at the age of five from viral encephalitis.

There are many myths and misconceptions about epilepsy.  Unfortunately, the media does not take much in epilepsy.  Because of the lack of interest in the disorder society doesn’t know all the facts about the disorder. The truth is that epilepsy does not affect the person who has epilepsy; it also affects the families and loved ones of that person.

It was very hard for me to accept my disorder. For many years I was in denial and I felt sorry for myself. Finally I joined a research group because I was desperate to find that magic drug that would help me control my seizures. I looked around and saw epileptics with brain damage caused by the number of seizures they were experiencing, people so drugged up that they could not talk, and people having up to sixty seizures a day, some an hour and a half long.

At that moment, I learned that I was lucky: I could function and experience the joys of life. So I worked on myself and learned to cope with my disorder. During this time, I went to a bookstore to get books on the disorder. I found no more than five books on the shelf.  Doctors wrote all of the books that were on the bookshelf. If you were not a doctor, you could not understand what they were saying. At that moment I was compelled to write my first book on the disorder, “ Epilepsy You’re Not Alone”. I did research, interviewed three hundred people with the disorder, and used my own experiences to help others cope with epilepsy and learn to live a happy, healthy, productive life. I did many seminars, helped the Epilepsy Foundation, went on TV, wrote articles, and had articles written about me. The Epilepsy Foundation honored me with an award for my efforts.

Even though I believed having epilepsy was not going to stop me from living a happy, productive life, I still worried if I could become a mother.  I wanted to have my own children.  I did not want to adopt.  But I did not want to bring a baby into this world with Down syndrome or any type of birth defect either.  Why should I bring a child into this world and make them live a life where they could not enjoy life to the full extreme.  That would be selfish on my part.   There was a lot to take into consideration.

After a lot of research, consultation with my doctors, long discussions with my husband.  We came to a decision that we were going to have a baby.  My doctor’s watched me closely.  I had a lot of tests and blood work and I took my medication religiously.

I was nervous during my nine months of pregnancy.   I tried to do everything by the book.  I ate nutritiously.  I made sure I steamed all my vegetables.  I made sure I always had a good night sleep.  I took all my medicine on time and did everything the doctor told me to do.  

I had a wonderful pregnancy.   I was not tired until my seventh month.  They had me taking Trileptal and Phenobarbital. In Europe Trileptal was used a lot with pregnant women with epilepsy.  During my pregnancies I had less seizures than when I was not pregnant’ I gave birth to Michael at eight and a half months.  Michael was health and had no birth defects.

Now years later, I have three healthy children. My son Michael, who is five years old, My daughter Alexis, who just turned three years old and baby Anthony who is seven months old. 

After my third pregnancy I decided to write my second book on pregnant women with epilepsy.  I spoke with many women over the years, who have epilepsy.  Many women with epilepsy were afraid to have children because of possible birth defects, afraid that the medication they were taking would have some type of negative affect to the baby, they were afraid their seizures would increase or the severity of the seizure. 

These are common worries that many women had with epilepsy, but as you know everybody’s disorder is different.  Some women have focal and some women have grand mal seizures.  Everyone reacts differently to various medications.  Some women can be controlled with medication and some cannot.  Some people’s seizure derives from the left or right temporal part of the brain, some from the frontal and some from all parts of the brain. 

What I am trying to say, is because each women’s disorder is different, depending on the type of epilepsy they have, past medical history, and their families past medical history, each women’s pregnancy will be different also.  This is why you need to consult with your doctor and see if it is a good idea to have children   

I noticed that a lot of women still believed in a lot of myths about pregnancy rather than theory.  I want to show others that you can have healthy children with epilepsy and be a great mother.  Life does not end because you have epilepsy.  It only has begun.  Everyday is a new day with new opportunities waiting and new things to explore.  Don’t think you can’t enjoy what life has to offer just because you have epilepsy. 

I will not let having epilepsy get me down.  I have a whole life ahead of me and I will make sure I enjoy every moment of it.   I can't drive; I have limitations in my life. But I refuse to let my disorder interfere with my life. I am determined to help myself and I want to help everyone who is affected by epilepsy.

 copyright 2001

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