Epilepsy experts call for more awareness of it in rural areas

Experts say policymakers, health-care providers and the public need to pay more attention to epilepsy in rural areas, Dr. Kay Miller Temple writes for the Rural Health Information Hub.

Epilepsy expert Dr. Joseph Sirven, the education chair of the American Academy of Neurology, said the affliction is "ridiculously common," especially in rural areas. "Here in the U.S.? Over a lifetime, one of every 26 individuals will develop epilepsy," Sirven told Temple. It can be deadly, too: 3,000 epilepsy patients die suddenly and unexpectedly from it each year.

But, Sirven said, epilepsy doesn't get much attention because people usually focus more on the conditions for which it is a symptom. "Instead, they talk about the conditions that cause seizures, from its link in premature babies born too small for their age, to Alzheimer’s disease, to stroke, to brain cancers, to traumatic brain injury. Epilepsy just doesn’t get the attention. It’s hidden. It’s in the shadows."

Epilepsy needs more attention though, he said, because of the logistical issues it brings and the social consequences. "Not to be overlooked is the fact that it’s a condition with high stakes: You can lose your right to drive, to fly, and you’re likely to deal with significant stigmatization," Sirven said. 

University of Iowa epileptologist Dr. Gena Ghearing explained why rural epilepsy patients often have a harder time than their urban peers: "An urban epilepsy patient often has access to a subway system or city bus transit, but our patients living on a farm or in a small rural town usually don’t have access to public transportation," she told Temple, "Not being able to drive just further compounds the many additional challenges of daily living for our rural patients." 

According to a 2018 review of scientific studies, one paper found that rural people with epilepsy in the U.S. and Canada suffer worse health outcomes than their urban peers, while five other papers found no difference, Temple reports. However, rural areas are often underrepresented in scientific data analyses, and the researchers recommended more research on rural epilepsy.