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She points to an 18-month-old who was having 50 seizures a day and whose development had arrested at 6 months; a hemispherectomy stopped her seizures. "I saw her recently and she's bright and chipper," Bare said.

The ever-increasing variety of medications allows nurses to bring satisfaction to their patients in a way that they often can't with other neurological disorders.

"We get patients from all over the Midwest, some of whom have been misdiagnosed. By changing their medications, we can make many seizure-free." Bare said.

Individual patient differences keep even experienced nurses on their toes.

Mimi Callanan, MSN, RN, an epilepsy clinical nurse specialist at Stanford Hospital and Clinics Comprehensive Epilepsy Center, has been working in this field for 20 years. "There's lots of information on women having catamenial seizures-that is, seizures tied to their hormonal fluctuations. But I've had to dig very hard to help men who have seizures every three to four weeks. You just don't find the information," she said.

Whole patient emphasis

"I know several celebrities with epilepsy," Bare said. You wouldn't know it, though, because the stigma attached to epilepsy is so great that Bare added, "no one will speak for epilepsy," the way actor Michael J. Fox has put a face to Parkinson's.

Stigma leads to discrimination. Bare notes that people with epilepsy can be living normal lives and "then one seizure totally changes it." They lose their jobs, their driver's licenses and much of their independence.

That means many nurses working in epilepsy find themselves gaining expertise in a variety of nonclinical areas (e.g., legal regulations, social issues, et al.).

DiMarco's role is part social worker. She points to a 21-year-old phone operator who had been driven to and from work by family and friends. Her managers thought they would make the job less stressful by giving her the 3 to 11 p.m. shift, but now her volunteer drivers no longer are available. In her area, "there are no buses and a taxi would cost her $60 a day," DiMarco said. So part of her job is helping her patient find additional rides.

Kathy Forkner is not a nurse, but as the overseer of the IES said, "Many neurologists don't ask, 'How's your life going in general?' " Instead, she said, "It's the nurses picking up on something else that needs doing and who help the patient with it." It's the nurse who'll help parents of a newly diagnosed teen find a program like the Epilepsy Foundation's "Entitled to Respect," which includes an online chat room for teens and tweens.

Callanan points out that few people with epilepsy die of their disorder, so nurses often educate patients on problems that span a lifetime.

"You're helping teens with issues like whether they should tell their friends. Seniors who are first diagnosed in their 60s suddenly lose their driver's license and their independence," she said.

Even issues that start out as clinical problems, like pregnancy and early-onset menopause, often require nurses to speak to the patient's emotional concerns as well.

"You're treating the whole patient," Callanan said, referring to a holistic concept discussed at last year's "Living Well with Epilepsy" conference in Baltimore, sponsored by the CDC, the American Epilepsy Society, the National Association of Epilepsy Centers, the Chronic Disease Directors and the Epilepsy Foundation.

Opportunity and variety

Numerous venues exist for nurses working in epilepsy. In a little more than two decades, the number of comprehensive epilepsy centers, like Callanan's workplace, has gone from five to more than 50 across the country.

Judy Ozuna, MN, ARNP, RN, has been working with people with epilepsy since 1977. She now works at the VA Puget Sound Health Care System in Seattle and has found one big difference from working in comprehensive epilepsy centers: "Much of the epilepsy is acquired-head trauma, stroke, tumor." So although the best treatment method can be debated, there's rarely guessing at the problem's cause.

Ozuna likes that "we have all the disciplines-like rehab and psychiatry-at our disposal," so the VA can treat more than just the seizures. For example, it's estimated that 51 percent of people with epilepsy have depression vs. 16 percent in the general population.

So a nurse could develop a subclinical specialty in depression while working with people with epilepsy. If there's any downside at the VA, it's that only a few facilities do the new, exciting surgeries or have high-tech equipment like video EEGs.