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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

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."

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