Room to Grow
Epilepsy nursing offers RNs a career with increasing roles and challenges and the opportunity to help the public expand its knowledge of the misunderstood disorder

By Wendy J. Meyeroff
January 23, 2004

Sherri DiMarco, RN, clearly remembers her introduction to epilepsy. It wasn't as a nurse, but as a child in school. "A boy in class had a grand mal seizure. The teacher hustled him out of the room," with no explanations. From that time on, she said, "we were all afraid of him."

You might think that led DiMarco to seek out a nursing career working with people with epilepsy, but that's not the case. She worked first in coronary intensive care and then in home infusion therapy.

Five years ago, the nurse working in DiMarco's part of the state for Indiana Epilepsy Services was leaving the job. After looking into the position (and remembering her former schoolmate), DiMarco decided she would like to take on the position, which she handles part time in conjunction with her duties at In-Pact, an agency that helps the developmentally disabled.

Today, DiMarco is one of eight experts who provide a wide range of skills to people with epilepsy in IES's 92 counties. "It's not even like working," she said.

No matter how they arrive or where they work-veterans hospitals, comprehensive epilepsy centers, children's hospitals or other facilities-each nurse emphasizes the versatility and satisfaction this specialty offers.

Enduring stigma

Most people, including the medical community, believe that epilepsy affects a relatively small portion of America's population, but the real reach of this disorder vs. other neurological conditions is not widely known.

The Epilepsy Foundation puts the number of Americans with epilepsy between 2.5 million and 3 million, but other sources say it may be as high as 4 million. In addition, 181,000 new cases develop every year.

Compare those numbers to better-publicized disorders: Parkinson's disease affects about 1.2 million Americans, while multiple sclerosis affects less than half a million.

With tremors and other symptoms, "Parkinson's and many other neurologic conditions are more visible," said Mary Bare, MSPH, RN, who works in the Epilepsy Program at Cincinnati Children's Hospital Medical Center. "Epilepsy is a hidden disorder."

In fact, people with epilepsy are so good at hiding the disorder that all the nurses interviewed believe the statistics on epilepsy are significantly underestimated.

Significant clinical advances in epilepsy treatment have developed during the last 50 years-progress that nurses in the field experience firsthand.

Bare started in the field 37 years ago and was studying at the Montreal Neurological Institute when American neurosurgeon Wilder Penfield was doing groundbreaking surgeries on epilepsy. Today, she said, "The technology is so advanced we can do procedures on patients who wouldn't have been eligible just 10 years ago."

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.

At Cincinnati Children's Hospital, Bare notes that the opportunities for nurses to work with epilepsy are expanding by leaps and bounds. "We have 12 staff nurses in neurology and 10 NPs, including two working exclusively in research trials."

The research work being done in epilepsy is an opportunity for nurses. Marcia Hill, RN, is the epilepsy nurse coordinator for the Baylor Comprehensive Epilepsy Center at The Methodist Hospital in Houston. "I was eager to work in research and neurology's always been my favorite field." She's part of a weekly "epilepsy conference" (along with neurosurgeons, pathologists and other disciplines) that evaluates potential participants for various trials-surgery, vagus nerve stimulation, etc.

All the nurses interviewed agree that epilepsy programs offer a more personal connection to patients like almost no other area. "Patients see us as friends. They call and say, 'Can I talk to you? It's got nothing to do with epilepsy,' " Callanan said.

DiMarco cites independence as a major plus to the IES program. Married with two children, she'll be working late one night (running a booth with epilepsy information at a school district's health fair) and leaving early another day. She may make home visits to patients/families in the more rural areas of her district. "I don't have to punch a clock, the hours are flexible and there's a lot less politics" than in a hospital environment.

Breaking in

While many of the nurses interviewed had backgrounds in neuroscience, others like DiMarco came from more varied training. Ozuna offers this advice: "Get a good overview. I did med/surg in a hospital for five years first."

One obstacle today is that nursing or grad schools provide almost no training in epilepsy. Fortunately, Ozuna said, "There are lots of good CE programs and the mentoring among nurses already in the field is great."

But Callanan warned, "If a nurse has never worked in epilepsy, there can be a very steep learning curve," not only in the clinical areas but in the nonclinical as well. "A lot of it you learn by the seat of your pants," Callanan said.

But nurses looking to break into the specialty are not alone, the experts say. Callanan relied on social workers and various outside agencies. Ozuna recommends organizations like the American Association of Neuroscience Nurses (www.aann.org) and the American Epilepsy Society for advice and information.

Nurses were near-unanimous in their praise of the Epilepsy Foundation. The national organization often can provide videos and other educational handouts; local chapters are resources for guidance through the murky maze of state regulations relating to job discrimination, driving, low-cost medications, etc.

Ultimately, said Joan Austin, distinguished professor at Indiana University's School of Nursing, "Seizures are just a small part of the picture for nurses working in epilepsy."

Contact Wendy J. Meyeroff at wendy.meyeroff@verzion.net