Epilepsy: Misconceptions and a mother’s motivationMay 25th, 2012 | By Caryn Sullivan | Category: Recent Pioneer Press Columns
Epilepsy is a neurological condition that can be nearly as traumatic for loved ones and bystanders to witness as for patients to endure. That was the message shared last weekend at the Epilepsy Foundation of Minnesota gala by Susan Axelrod, Chair and founding member of CURE (Citizens United for Research in Epilepsy), and Minnesota Gopher football coach Jerry Kill.
A seizure is a change in sensation, awareness or behavior triggered by abnormal brain activity. When a person suffers more than two or three seizures, he has epilepsy. A spectrum condition, epilepsy involves more than 20 types of seizures ranging from life threatening to benign. A grand mal seizure occurs when the patient convulses and loses consciousness. An absence seizure occurs when the individual briefly stares or looks spaced out.
Axelrod, whose daughter has epilepsy, recounted how centuries ago, it was considered a curse to be treated by sacrifice or drinking the blood of an executed criminal. Sigmund Freud attributed epilepsy to Oedipal complexes, incestuous fantasies and severe hysteria. Some cultures still use ritual dances, spiritual treatments and exorcisms to ban the imagined evil spirits.
Neurological diseases are drawing attention as patients share their experiences and professionals reveal their discoveries. But, according to a March 2012 report by the Institute of Medicine titled “”Epilepsy Across the Spectrum: Promoting Health and Understanding,” what distinguishes it from other brain disorders is an enduring and stigmatizing misperception.(http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum.aspx).
Citing the unpredictable nature of seizures, the feeling of helplessness bystanders experience and centuries of misinformation, the IOM reported that more than a third of students with epilepsy and nearly a quarter of their parents kept it a secret so they wouldn’t be treated differently or stigmatized. “Many people with epilepsy fear that openly discussing their diagnosis will result in the loss of relationships, driving privileges, jobs, and more,” the report states.
According to Vicki Kopplin, executive director of EFMN, the stigma stems from people not knowing what epilepsy is or thinking it’s something that it’s not. Roughly 70 percent of people with epilepsy achieve seizure control so not everyone feels the stigma, she said.
More than 2 million Americans have epilepsy and many have concurrent medical conditions such as cerebral palsy, autism, and depression. The cause is typically unknown though it can be attributed to brain tumors, stroke, head trauma, or genetics. About 50 percent are diagnosed in childhood. Children can suffer developmental delays and brain damage and require lifetime care and support. Epilepsy also affects adults, including those with Alzheimer’s disease and combat injuries.
Axelrod (wife of David Axelrod, advisor to President Obama) was unfamiliar with epilepsy until it struck her 7-month-old. One morning in 1982, the new mother went to waken her healthy daughter but found her lying motionless in her crib, limp and blue. Then the terrifying movements began: one arm stiffened, her eyes rolled back in her head, she frothed at the mouth and she uttered guttural sounds. Lauren was hospitalized for a month with non-stop seizures.
Over the years, Lauren had thousands of episodes. She took scores of medications, often several simultaneously, but experienced more side effects than benefits. Special diets and vagus-nerve stimulation were ineffective. Despite many diagnostic tests, the cause remained a mystery. But at times Lauren sensed the onset of a seizure and begged her mother to make it stop.
When she was 18 years old, Lauren began taking Keppra, an anticonvulsant medication. For the past 12 years, she has been seizure-free, though the family fears a recurrence. She holds a part-time job, has a social life, and lives with support in Chicago.
Thirty years after that fateful morning, Axelrod is a well-versed advocate. In 1998, she joined forces with other mothers and founded CURE. While more people suffer from epilepsy than from Parkinson’s, multiple sclerosis, cerebral palsy and muscular dystrophy combined, a woefully disproportionate amount of federal research funds are allocated to it, Axelrod contends. So CURE has raised nearly $20 million for research and funded more than 125 research projects worldwide with an emphasis on uncovering the underlying mechanisms of the disease.
Last September Coach Kill, a newcomer to Minnesota, had a seizure while on the sidelines during the final seconds of a televised Gopher football game against New Mexico State. Thousands watched as the coach convulsed on the ground. Since 1999 he’s had many seizures. Though he is unaware of what’s happening during a seizure, Kill realizes it’s frightening for those who observe it. Like Lauren, Kill is successfully controlling his condition with Keppra.
Kill’s public seizure raised both awareness about the condition and questions about his ability to perform his job, Kopplin said. But for Kill “there is no greater game than football to teach you how to overcome obstacles in life.” Despite his epilepsy, he and his wife are living their dream, he said. His advice: “Don’t let anybody tell you that you can’t do something because of epileptic seizures. Don’t give up.” Sooner or later, he predicted, the medical community will figure it out.