Epilepsy: Misunderstood and More Common Than You Think

Psychologist Robert Mittan shows a crowd in Oxford the effects of epilepsy on the brain.

Epilepsy might not be associated with demonic possession anymore, but it’s still misunderstood, even though it’s the third most common neurological disorder in the country. Last week, a conference in Oxford worked to change that. Cari Gervin reports.

Robert Mittan is pacing in the front of the auditorium, pausing a movie to crack a joke. He’s wearing a tie with a rubber chicken on it, and that, combined with his Fu Manchu moustache, makes Mittan seem like that goofy high school teacher everyone had – you know, the one who always had a pun ready for any occasion.

But Mittan has a Ph.D. in psychology, and, despite all his jokes, he’s spending the day talking about something serious. That movie he just stopped? It’s a video of people having epileptic seizures.

For the past 25 years, Mittan has traveled the world presenting a two-day seminar called the Seizures & Epilepsy Education program, or SEE. He says that many of the three million people diagnosed with the disease in this country remain confused even after medical treatment.

“For physicians, I mean, they have a problem. The way medicine is practiced in the United States, they don’t really have the time to sit down and explain in detail the issues that patients and their families need to know.”

Annie and Eric Weber are the reason Mittan is in Oxford – well, really, it’s because of their eighteen-month-old daughter, Helen. Just after Helen was born, she had a stroke, which is surprisingly common for babies going through the traumatic experience of being born. Eight months later, Helen began having seizures. After rounds of tests, she was diagnosed with epilepsy.

“It’s awful. I can’t imagine anything worse, really,” says Annie Weber. “When things go wrong in the brain, it’s just – you can’t see it, you can’t really fight it, and you don’t really understand it.”

Her husband joins in: “Yet you can’t imagine a place for an injury that would have a greater impact, so it’s incredibly scary.”

The Webers discovered that they, like most people, really knew nothing about epilepsy. Helen had been having severe infantile spasms. Once they got those under control, they realized it was only part of the problem. Again, Eric Weber:

“You know, when you think about a seizure, before you know anything about them, you think about people shaking on the floor. But subclincal seizures are things you can’t see. So it’s sort of shocking to think that that’s possible.”

And that’s the problem with epilepsy. There are more than 40 different types of the disease, and it can afflict people of any age. The disease is frequently caused by a stroke or head injury, and as baby boomers get older, the rate of epileptics in the country is expected to soar.

And, as in the Webers’ case, some types of seizures are so brief – signaled only by blinking, for example – that they escape diagnosis. Different types of epilepsy require different medications, which means many epileptics still have seizures, when, with the right treatment, they wouldn’t.

Kristin Lape is the education services coordinator for the Epilepsy Foundation of Mississippi. The foundation estimates there are thirty thousand Mississippians dealing with the disease. But Lape thinks that’s probably a low estimate.

“It is more common than multiple sclerosis, than Parkinson’s, and all these other diseases, and there is not that much awareness. So our goal is to get it out there in everyone’s face – just say, look, this is also a disorder that is just as common or more common as these, but there is not much being done.”

Lape says that in addition to more research, Mississippians need more opportunities to learn about epilepsy. For example, despite its 25-year-history, this was the first time Robert Mittan brought the SEE program to the state.

And for parents of epileptic children, information is important. Once the Webers found out Helen was having more than one type of seizure, they were able to adjust her medication. Annie Weber says her daughter has now been seizure-free for six months.

“Putting her on the medication, it was kind of like flipping a switch. She was listless and not very engaged, and then once we got the seizures under control, it was like she came back, from wherever it was that she went, she came back and started to show us how happy she was.”

For a disease where the treatment goal is to help the patient live a normal life, the Webers couldn’t ask for anything else.
For MPB News, I’m Cari Gervin in Oxford.