Understanding epilepsy

Misconceptions hinder treatment

For nearly three thousand years, people believed that epilepsy had a supernatural cause. But the most dangerous misconception about epilepsy is a modern one, according to epilepsy expert Jerome Engel, Jr., M.D., Ph.D.–many people, including physicians, still believe that epilepsy can’t be treated.

“Epilepsy and epileptic seizures are far more common than people realize,” said Dr. Engel, Jonathan Sinay Professor of Neurology and Neurobiology at the David Geffen School of Medicine at UCLA, chief of epilepsy and clinical neurophysiology at the UCLA Center for the Health Sciences and director of the UCLA Seizure Disorder Center, Reed Neurological Research Center, Los Angeles.

Dr. Engel spoke today at an American Medical Association media briefing in partnership with the American Academy of Neurology (AAN) and the American Epilepsy Society at the AAN’s annual meeting in San Francisco.

Epileptic seizures are a sign of brain dysfunction. “A very simple way to explain a seizure might be as overactivity in the brain, often, though not always, the result of an injury,” he said. “Epilepsy is the chronic condition that results when these brain disturbances persist. Early diagnosis and treatment are vital, because seizures should be stopped before the patient suffers irreversible damage.”

Forty million people worldwide have epilepsy. Five to 10 percent of the U.S. population will have a seizure during their lifetime and of those, 30 percent will develop epilepsy. The burden of this disease, however, can’t be understood simply through the numbers, according to Dr. Engel.

“Uncontrolled epilepsy presents an enormous personal burden,” said Dr. Engel. “Seizures happen without warning and are frightening and embarrassing; they can result in accidental injury or even death. Imagine the restrictions this places on an active life. A person with epilepsy can’t drive a car, hold certain jobs, or participate fully in recreational activities.”

“This is a disease that strikes the young, often children,” Dr. Engel said. “This means years and years of disability, lost years of good quality of life and lost earnings. When these elements are factored in, the impact of epilepsy worldwide is equal to the impact of breast cancer in women and lung cancer in men.”

The restrictions on daily activity and years of disability would be bad enough, but they are made worse by the stigma that is still attached to epilepsy. “Even today a surprising number of people believe epilepsy is supernatural, caused by possession,” said Dr. Engel. “Many people still believe that epilepsy is a psychiatric disorder or mental retardation. An editorial in the British Medical Journal recently put it well: “The history of epilepsy is 3000 years of ignorance, stigma, and discrimination and 100 years of knowledge, stigma, and discrimination.”

The most destructive misperception about epilepsy is that it can’t be effectively treated. “Even physicians often believe that seizures can’t be stopped, leading to treatment delays that can result in preventable, irreversible disability,” said Dr. Engel. “Our treatment objectives should be no seizures, no side effects and the earliest possible intervention.”

Guidelines can have an enormous impact on treatment by educating physicians and directing research goals. “Last year, the American Academy of Neurology introduced guidelines stating that surgical treatment for temporal lobe epilepsy is effective, but did not answer the question of how quickly it should be considered’,” said Dr. Engel. “Their recommendation has resulted in the National Institute of Neurological Disorders and Stroke (NINDS) committing $30 million dollars for the Early Randomized Surgical Epilepsy Trial (ERSET) to address this issue.”

Media Advisory: To contact Jerome Engel, Jr., M.D., Ph.D., contact Dan Page at 310-794-0777 or dpage@support.ucla.edu. On the day of the briefing, call the AMA’s Science News Department at 312-464-2410, the AAN Press Room at 415-978-3521 or email kstone@aan.com.