Shedding light on epilepsy: advocacy groups are pushing to raise awareness about epilepsy and encourage legislatures to make it a more integral part of public health programs.

• Author: Guiden, Mary

Jack Thoman is in his late 40s and lives in the western part of the United States. He is a director at a high-end computer company. He's married and has a child.

Jack was diagnosed with epilepsy when he was 21, after being involved in two car accidents. The second wreck--which led to his finally being diagnosed--killed two people and left another person paralyzed. Jack says he should have been diagnosed years before the tragedy occurred, or at least the first time he was in an accident. But doctors and even his family ignored the obvious.

"If doctors and others had been a little bit more open minded, they could have prevented the accident," he says quietly.

Even after he was diagnosed, family members were reluctant to discuss his condition openly, Thoman says. "Nothing against my parents, but after I was diagnosed, they said, 'You shouldn't talk about it. Yes, you have it, but let's just put it in a corner' was more or less what was said."

Mary Jeanne Hubbell is 28 years old and lives in Washington, D.C. She and her husband, Al, welcomed their first child, Aidan, into the world this past January. Mary Jeanne, who grew up in Delaware, was diagnosed with epilepsy when she was only about 3 years old. Her mother, who also has epilepsy, recognized the signs of the disease and "took the necessary steps," as Hubbell describes it.

When she was a teenager and somewhat rebellious, she wasn't good about taking her medication. Sometimes it made her so nauseous, she refused to take it. As a result, she had numerous seizures and would wake up later with bruises and, sometimes, a split lip.

By the end of her high school years, her doctor explained to her that all the seizures she'd had were sim-ilar to hits taken by a box-er. "He said, 'I think you probably have about 10 seizures left in you before you do permanent damage to your brain,'" Hubbell says.

Jack and Mary Jeanne are two of the 2.3 million Americans living with epilepsy, a chronic medical condition produced by temporary changes in the brain's electrical function. The changes cause recurrent seizures, which affect a person's awareness, movement or sense of touch. Seizures range from convulsions to a brief loss of awareness or confused behavior and changes in sensation, according to the Epilepsy Foundation of America, a Maryland-based nonprofit group dedicated to research, education, advocacy and services for people with seizure disorders and their families.

NEW LEGISLATIVE ISSUE

The foundation, in conjunction with the U.S. Centers for Disease Control and Prevention (CDC), is working hard to raise awareness about epilepsy and to make it a more integral part of public health programs in the states. As a legislative issue, epilepsy is still somewhat new. The first national conference addressing epilepsy and public health was held five years ago in 1997.

"Epilepsy as a public health issue has not been addressed for a long time, despite the fact it affects 1 percent of the population. And there are plenty of conditions that have a smaller impact that are being addressed," says the foundation's Sandy Finucane, vice president of government affairs. Over the past 10 years, however, the CDC's epilepsy program has grown dramatically. The second national conference on public health and epilepsy--a followup to the 1997 meeting--is slated for July.

Both the...