TALKING IT OVER
January 13, 1999
Not long ago, I had the opportunity to catch up with an old friend from Chicago. In the course of the conversation, he told me about his daughter, Lauren. Although Lauren was a happy, healthy baby at birth, she began to have seizures at the age of 7 months. Seventeen years later, the seizures continue, the cause has never been identified, and Lauren's development has been irrevocably delayed. She will never live independently and will require lifelong supervision and support. As her father spoke, I could see and hear the devastating impact Lauren's epilepsy has had, not only on her own life but also on her entire family.
When I heard Lauren's story, I was determined to learn more about this condition and bolster this administration's efforts to improve treatment and find a cure.
Nearly 200,000 Americans are diagnosed with epilepsy each year. Current treatments control symptoms in most of their cases. Yet the word epilepsy still provokes profound fear and misunderstanding.
Epilepsy is a chronic brain disorder characterized by spontaneous, recurrent seizures that range from brief lapses in attention to prolonged losses of consciousness with convulsions. It affects more than 2 million Americans -- one out of every 100. Of these, 300,000 are children. Head injuries, brain tumors, stroke, lead poisoning, genetic conditions and infectious illnesses can cause epilepsy. But in more than half of all cases -- like Lauren's -- no explanation is ever found.
According to a new report, "Epilepsy: A Report to the Nation," sponsored by the Epilepsy Foundation of America, anti-seizure drugs and other forms of treatment can control or eliminate seizures in 75 percent of those affected.
These people live nearly normal lives -- lives that can be both personally and professionally fulfilling. But even they never escape the uncertainty or the potential social stigma that comes out of ignorance -- a stigma that can crush the spirit as surely as the disorder debilitates the body and the brain.
Tragically, though, for the nearly 600,000 like Lauren, the disorder is intractable. Drugs, diet, surgery and other treatments just don't bring their seizures under control.
One of the most heartbreaking aspects of epilepsy is the toll it takes on children. Seizures in early childhood often produce developmental delays and brain damage that can lead to a lifetime of dependence and extraordinary costs. Children with epilepsy are at special risk for learning problems.
They fall behind in reading, language development and general knowledge. Children who have frequent seizures can't even go to school. Perhaps worst of all, they live in constant fear of their next seizure.
If these children are ever to live the normal, healthy and happy lives they deserve, we must dedicate ourselves to finding a cure now.
I'm pleased that the President's budget for this year includes a 14 percent expansion for the National Institutes of Health, the largest funding increase ever. Of this, an unprecedented $76 million is for epilepsy research alone. But we must still do more.
This week, I'll be in Chicago for the dedication of a new epilepsy center at Rush Presbyterian-St. Luke's Hospital and a major nationwide fund-raiser for epilepsy research. There, I'll release the Epilepsy Foundation's report and talk about the administration's next steps in the effort to eliminate the disorder.
Next year, NIH researchers will convene the first-ever administration conference on epilepsy, bringing together more than 150 experts and members of the public focused on finding a cure. In addition, the Centers for Disease Control and the Agency for Health Care Policy Research together will launch a campaign to educate medical practitioners about the critical need for early and accurate diagnosis.
I have heard from many families around the country who have been touched by epilepsy. Some share the pain of lives destroyed and promising futures extinguished. Others marvel at the seemingly miraculous -- when drugs, surgery or diet actually bring an end to the nightmare.
But the message is the same: More research dollars are critical if we are to devise innovative, safe and effective treatments or find a cure. No one has said it better than the parents of 12-year-old Philip Gattone, whose seizures ceased following a combination of successful surgery and drug therapy. They wrote:
"Today, Philip plays sports, participates in school activities and clubs, and loves learning. He has friends that care about him. He is our hero.
"There are so many children that need help. The fight for a cure is a daily battle, and it is real. It is a fight that must be won. Only research and new treatments will help these special families achieve their dreams of recovery from epilepsy."
For more information on epilepsy, visit the Epilepsy Foundation of America at www.efa.org.
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