The Fight To End Epilepsy: An Interview with Dr. Orrin Devinsky

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Photo: Chris Hope

Two million people have it. 11 million will have it. It’s slightly more common in males than females, and although 70 percent of children will outgrow it, it can affect people of any age, starting in infancy or in middle age. It can be hereditary — even if no family members have it — or it can come from a head trauma or out of nowhere. And 30 percent of all cases go untreated.

It’s epilepsy, one of the oldest documented and misunderstood brain disorders in history. In 400 B.C., Hippocrates recognized that epilepsy was a brain disorder, and “he refuted the ideas that seizures were a curse from the gods and that people with epilepsy held prophetic powers,” writes Dr. Orrin Devinsky in “Epilepsy: Patient and Family Guide,” the third edition of the definitive handbook for epilepsy. Witches — who were hunted down and killed — were often characterized by seizures, and by the 19th century, epilepsy was considered a contagious and psychiatric disorder. “In the early 20th century, some U.S. states had laws forbidding people with epilepsy to marry or become parents, and some states permitted sterilization,” Devinsky writes. “We have come a long way.”

Parkinson’s disease has celebrity Michael J. Fox representing it (he is also afflicted), AIDS has Elton John, colon cancer has Terrence Howard (whose mother died from the disease), and breast cancer has those little pink ribbons and myriad celebrities touting the need for a cure. But epilepsy has few famous public advocates. “A lot of people have epilepsy and it’s not widely known,” says Dr. Scott Hirsch, primary neuropsychiatrist at the New York University Comprehensive Epilepsy Center. Compared to other diseases, epilepsy is “underfunded and under-researched and not as vocal,” says Hirsch, who is also a clinical assistant professor of neurology, psychiatry, and child and adolescent psychiatry at the NYU School of Medicine. “It’s important to have that for epilepsy.”

Epilepsy does have that advocate in Devinsky, the founder and director of the NYU Comprehensive Epilepsy Center in New York, the largest epilepsy center in the United States, which has more than 2,500 referrals per year. Devinsky may not be a celebrity, but the professor of neurology, neurosurgery, and psychiatry at NYU School of Medicine has published more than 250 articles and chapters in more than 20 books on everything from the origins of brain delusions to “Embarrassment as the Aura of a Complex Partial Seizure.” Devinsky has been named Best Doctor by numerous publications and organizations, and he co-founded epilepsy.com­ and the Epilepsy Therapy Project, as well as FACES (Finding a Cure for Epilepsy and Seizures), an organization that promotes research into new treatments.

“I thought I’d do more basic science,” Devinsky recalls, sitting behind his desk in a corner office on Manhattan’s East Side. When he attended Harvard Medical School in the early ’80s, he loved studying the brain but felt unsure about neurology because he thought that, with brain tumors, “you just gave them a diagnosis and sent them home.” But his mentor in medical school, Dr. Norman Geschwind, the father of modern behavioral neurology in America (as well as the creator of the term behavioral neurology), attracted Devinsky and countless others to the field. One of Geschwind’s areas of interest was epilepsy and how it worked; Devinksy decided to focus on that. “Epilepsy was a very attractive area,” he says. “It was one of the few areas of neurology [at the time] where you could do something for someone … You could help people.”

And help people he does, since founding the center in 1989, always searching for better and earlier diagnoses, better treatments and a better quality of life for his patients. One of his major accomplishments is bringing the disorder to the forefront of society — explaining the disorder, its causes, treatments like drugs, surgery, and lifestyle changes.

“A seizure is a brief, excessive discharge of brain electrical activity that changes how a person feels, senses, thinks, or behaves,” he writes. “During an epileptic seizure, the regulatory systems that maintain the normal balance between stimulation (excitation) and dampening (inhibition) of nerve cells break down. For example, there may be a loss of inhibitory activity or an overproduction of an excitory neurotransmitter that causes a group of neurotransmitters to fire excessively. These in turn may stimulate neighboring cells or cells with which they have strong connections. Ultimately, large populations are abnormally activated all at once (synchronously). That is, the electrical discharges of many cells become linked, creating a storm of activity.”

His websites, books, and articles all answer common questions such as: “I had one seizure, will I get epilepsy?” (There’s a 50 percent chance.) “Does epilepsy cause mental illness?” (No, but there is a higher rate of anxiety and depression.) “Do seizures change the brain?” (Brief ones don’t, but grand mal ones lasting longer than 20 minutes do; memory problems often occur in either.) “If I have epilepsy will my children?” (Probably not.) And, “Is epilepsy a lifelong problem?” (No, most people need medication for a short time, and if a person is seizure-free for two to four years, they can often go off meds.)

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