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Fifty million people have epilepsy worldwide, and more than 2.7 million are in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder – and the side effects of epilepsy medications – can cause problems in learning, memory and behavior, and indelibly alter development. It can also consume families, monopolizing their time, money and energy. Yet despite the number of people with epilepsy – the disorder affects more Americans than do Parkinson's disease, multiple sclerosis and Lou Gehrig's disease combined – it still carries a stigma that dates to ancient civilizations. Many patients, doctors and families say that stigma hampers care, public recognition and the ability to raise money for research.
"There is an ongoing, significant embarrassment level about it," said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University. "The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even. At some level, it's society that needs to wake up and realize it's just another neurologic disorder." Epilepsy has never found an icon like Michael J. Fox, whose openness about Parkinson's disease helps raise tens of millions of dollars a year for research.
Meanwhile, despite advances that have helped people with treatable epilepsy, the 30 percent rate for the intractable form has changed little in 40 years. "Refractory epilepsy remains an enormous problem, and there's just no doubt about it," Dr. Devinsky said. Epilepsy results from an electrical disturbance in the brain (though at various stages in history it has been thought of as evidence of a connection to the divine, a sign of demonic possession or the mark of a witch). Types of seizures vary from staring episodes or eye blinks to sudden falls or convulsions. All can be debilitating, depending on factors like frequency and the age when they start.
Comprehensive Epilepsy Centers, medical practices that specialize in treating the disorder at 50 hospitals around the nation, represent the gold standard in therapy. Treatments include anticonvulsant medications, which can have profound effects on memory, behavior and cognitive ability; the ketogenic diet, a restrictive plan that has had remarkable success in controlling seizures; an implanted stimulator that sends regular pulses of electricity to the brain; and surgery to remove an affected area of the brain.
In the last two decades, surgery has changed the landscape of epilepsy for many patients, including children. Families of children with intractable epilepsy often have a hard time getting the constellation of services they need. Often no one tells families about the therapy their child needs. And finding the right school can be extremely difficult. Social isolation is a persistent issue. Schools may not want to include students with epilepsy on field trips; peers may not invite them for sleepovers.
Dr. Christina Bergqvist, a neurologist at Children's Hospital of Philadelphia notes "It is frightening to see a child seize. And then based on that fright, people decide, ‘I can't deal with that child.' People still think it's contagious." All of the prevailing treatments that doctors have tried – from medications like Depakote and Topamax to the ketogenic diet that requires vast quantities of fats and almost no carbohydrates to vagus nerve stimulators have issues and possible side-effects, but progress is being made every day.
For his part, though, Dr. Devinsky says that although many families are torn over the correct path to take, are on the right track. "If there's a message, it's not to give up," he said. "They should do everything possible to maximize the quality of life of their child, but at the same time, never, ever give up. Because there will be other things coming down the pike."
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