More Than Hugs

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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.

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Posted By: hope4 @ 05/01/2009 6:47:16 AM

Thank you for speaking up and sharing your story. So many suffer in silence with this disease.
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Posted By: anastesia @ 10/08/2008 1:25:03 PM

My brother had seizures from the time he was 18 months old until he was 14 years old. My parents took him to the Cleveland Clinic where they did the most amazing surgery. The part in his brain that gave him the seizures, the doctors removed it. My brother brother is now 27 years old and is seizure free. Our family is grateful to God and to the doctors at the Cleveland Clinic that gave my brother a chance to live life seizure free.
This operation my not be for everyone but if someone else can be helped like my brother, I would urge you to speak to the doctors at the Cleveland Clinic.
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Posted By: gibbyfraz @ 06/05/2008 9:58:36 PM

Please God, let more and more people be aware of epilepsy. My brother suffered from epilepsy all of his forty four years. The Hidden Disease took his life. A life that lived in the shadows of others due to the unknown and fear of exposing of what he had. I think if you admitted your were a substance abuser you would get more assistance and a stable job! Shame on our society. Yet, let us who know how it feels to have a loved one with epilepsy fully support more awareness. I will continue to do so as my brother has passed but his fight still lives on.