Epilepsy affects millions; and yet, the cause of the neurological disorder is in most cases is unknown.
Also unknown are the details of the leading cause of death from epilepsy, what medical professionals call "sudden unexpected death from epilepsy" or SUDEP. Recently, University of Iowa neurologists have been chosen to join only 8 other groups around the world to study SUDEP.
On this edition of River to River, Ben Kieffer talks with one of the UI's lead SUDEP researchers, Dr. George Richerson, as well as Roxanne Cogil, director of Iowa Epilepsy Services at the Epilepsy Foundation, and Teresa Elliott, who lost her son unexpectedly from a seizure at 30-years-old.
Dr. Richerson, Cogil, and Elliott all agree that the main issue with SUDEP is public and medical providers' lack of knowledge.
"SUDEP is a lot less talked about, but more common than SIDS [sudden infant death syndrome]," says Cogil. "Some neurologists are still reluctant to talk about SUDEP with their patients."
Dr. Richerson says this has to do with a physician's reluctance to scare patients unnecessarily, or in many cases, physicians just don't have enough background knowledge.
"SUDEP has not been taught in medical schools across this country," he says.
Dr. Richerson and fellow UI researchers hope to find out more about the cause of SUDEP in an effort to increase awareness and prevent future deaths. The UI consortium of scientists will join the Center for SUDEP Research, and will receive funding totaling $5.9 million in 2014 from the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health.
Ben Kieffer also talks with Maria La France, the mother of 13-year-old Quincy, who suffers from Dravet syndrome, a particularly catastrophic form of intractable epilepsy. While last legislative session, the state of Iowa voted to allow cannabis oil to treat forms of epilepsy, La France says it is still hard to obtain legal cannabis oil, so she is advocating for less restriction on the substance.