Thank you for speaking up and sharing your story. So many suffer in silence with this disease.
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As is the case with any serious illness, having a parent or child with epilepsy can undermine the emotional and financial health of families, leading to higher rates of depression, divorce and even bankruptcy. Living without health insurance only exacerbates these challenges.
During our journey with Rebecca, we have been fortunate to meet with some of the most respected neurologists in the nation, as well as senior officials at the National Institutes of Health. Despite their best intentions, it's painfully clear that more research needs to be done on the root causes of epilepsy and the development of safer, more effective treatments. As one prominent West Coast neurologist explained to us in a moment of candor: "There is nothing we can do to help your daughter." That's not the sort of news any parent wants to hear.
The list of successful people who have had epileptic seizures includes Truman Capote, Richard Burton and Neil Young. Historians also believe Vincent Van Gogh, Beethoven, and Isaac Newton exhibited symptoms consistent with epilepsy. And when Supreme Court Chief Justice John Roberts suffered his second documented seizure earlier this summer, many doctors concluded he has epilepsy, which is defined as two or more unprovoked seizures. But most victims continue to suffer in silence, living substandard lives in the shadows of a culture that shows little understanding of their plight. Epilepsy still carries with it an unfortunate stigma and leaves many people hiding the condition from their employers, co-workers and friends.
To add to this burden, Hollywood films and TV shows routinely feature insensitive jokes about epilepsy, as if someone having a seizure is something to laugh about. But I can assure you that having a loved one with epilepsy is no laughing matter.
Until more research leads to a significant medical breakthrough, it will be tough for anyone to live well with epilepsy. In our family's case, we just try to live on in spite of it and hope that someday soon, something will change for the better and Rebecca can enjoy her pasta in peace.
Randy Siegel is publisher of Parade magazine. He lives near New York City.
© 2007
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