Robert Gumnit, M.D., founder of the first comprehensive epilepsy center in the United States, says the way patients and doctors deal with seizures is like a comedy routine, except it’s not funny: a man has a seizure and thinks to himself, That’s odd. If it happens again I’ll tell my wife. It happens again, so he tells his wife; she says, That’s odd. If it happens again you should tell a doctor. It does, so he tells his doctor, who might say, I’m not sure what happened to you. Why don’t we wait to see if it happens again?
“As a result,” Gumnit says, “the identification of the patient who needs treatment is delayed, often by many, many years. That puts the patient behind the 8-ball because the more seizures you have, the harder they are to treat.”
Epilepsy is a seizure disorder that involves a sudden surge in electrical activity in the brain. There are still many unknowns about the exact causes of seizures. An estimated 1 out of 11 people will have a seizure in his or her lifetime, but according to Gumnit, a vast majority of these cases never recur or are easily treated; just one percent of the population has repeated seizures that require careful medical attention. Treatment comes in the form of medication and, possibly, surgery—both of which have been highly effective in controlling seizures. The problem, according to Gumnit, is establishing a proper diagnosis. Help is out there; patients need to know how to access it.
Due to the complexities of epilepsy, it’s critical that patients see a specialist. The National Association of Epilepsy Centers has approved more than 170 specialized epilepsy centers in the United States (including Gumnit’s MINCEP center). But Gumnit knows many seizure sufferers never see the inside of one. Patients and physicians alike often don’t know how to handle seizure disorders: “they don’t want to deal with it, they’re afraid of it, they don’t understand it.” He says that the majority of people with uncontrollable seizures are in the hands of primary care doctors.
“Most doctors know, if they’re lucky, how to use two or three medicines. And because of the crazy reimbursement situation and denial, these patients are getting the idea that nothing more can be done for them and they don’t get up the referral chain, especially if it means they have to make a journey.” Gumnit says that people come to his center from all over the world, but they are a “tiny minority of very motivated people.”
Although progress has been made, there is still a stigma associated with seizures, a topic Gumnit covered in a story for Cerebrum in 2004. He says that, in the workplace, anything that is “disruptive or requires accommodation or is frightening,” as a seizure might be, is not something employers want to deal with.
Gumnit hopes that increased dialogue about epilepsy will help combat any stigmas. He would like to see positive role models who have seizures be more willing to talk about their condition. For example, Jerry Kill, the University of Minnesota football coach, was hesitant at first to speak in public about his seizures. But he orchestrated an epilepsy awareness campaign at one his team’s games earlier this season, a feat Gumnit called a “real breakthrough for the epilepsy people.” Getting more people like Kill to lend local support, coupled with a message about the importance of early treatment, is “probably the most important thing we can do.”
“Right now we have enormously powerful tools that, if used early and in a systematic way, would change the lives of millions of patients in this country. All they have to do is go to a good epilepsy center and find the money to pay for it, and those are not easy…I really feel strongly that we have a systems problem more than anything else.”
For more information about epilepsy, visit the Dana BrainWeb epilepsy page.
– Andrew Kahn