29th IEC: Battling Stigma, Slow But Real Progress

Stigma is the question,
courage the anther.

It’s a common--and fair--complaint that epilepsy isn’t getting its share; it doesn’t get the research dollars it deserves, nor the social attention. Funding lags behind less disabling disorders with lower prevalence, and public understanding lags just as far. That’s the case after many decades of hard and excellent work by organizations like the Epilepsy Foundation and The Epilepsy Society on the US front and The International Bureau for Epilepsy and the International League Against Epilepsy on the international one. It is easy to get discouraged.

I had a fascinating discussion today with neurologist Mark Cook,  Chair of Medicine at St. Vincent’s hospital at the University of Melbourne. He was speculating about possible neuro-psychological explanations for epilepsy's troubles.  People may react to seizures the way children react to the sight of a snake, he says: deep-seated, reflexive fear. If a person faints in public, people draw in close, catch them, care for them. Too often, when a person seizes in public, the crowd draws back in fear and, yes, revulsion. The idea that the stigma of epilepsy is more than simply social, that there is an instinctive aversion, makes the job of the epilepsy advocate a lot harder. Yes, it is very easy to get discouraged. 

But the International Epilepsy Congress (IEC) I've been attending in Rome  is an antidote. You can’t spend three days surrounded by the dedicated doctors, researchers, and epilepsy advocates here and not feel hope for progress. And that progress will benefit everyone, not just epilepsy patients. Since 240 BC, when Hippocrates wrote On the Sacred Disease, the first medical textbook, epilepsy studies have advanced the cutting edge of neuroscience. Many, if not most, of the major landmarks in the understanding of the human brain have come from epilepsy patients and the doctors and scientists who attended to them. It’s still true.

Deep brain stimulation, brain machine interfaces, the use of viral vectors, stem cells, and anti-inflammatory agent are all frontiers being pushed back by modern epilepsy research. So, too, are optogenetics, deep brain stimulation, and the use of high-density EEG-fMRI imaging, not just for looking at seizures, but also for studying the brains of people with epilepsy between seizures.

On the social side, Mike Glynn, president of the International Bureau for Epilepsy (IBE), reports encouraging signs of progress among the those trying to correct pervasive misconceptions about epilepsy and the prejudice that stems from them. The increased focus on SUDEP, for instance, and the pressure placed on neurologists around the world to talk to the patients about it is a “huge step forward,” he said in an interview today.

“It’s a difficult discussion for everyone. But especially doctors,” he said. “And it was a brave move on the part of Solomon Moshe [President of the International League Against Epilepsy] to make it the focus of the Congress' Presidential Symposium, which was attended by an overflow crowd of 1,500 delegates.

Glynn’s organization is also working hard to seed projects that will help people with epilepsy in the developing world. “The IBE has given 50 small grants in the developing world over the past five years to initiate programs that aid people with epilepsy. An example of one that is working well, Glynn says, is in Zambia, where local activist Anthony Zimba has created an employment program for epilepsy patients. Five volunteers from the epilepsy community, organized and inspired by Zimba, are running the program, which sustains dozens of people who would otherwise have no way to make a living. They have cleared an area of scrubland for use in raising chickens for sale and growing fruit for jam production, also for sale. That the program is volunteer-run is extraordinary, says Glynn, because the stigma of epilepsy in Zambia is tremendous. "No one wants to be identified with the disease," he says.

“It takes great courage for a person to identify oneself as epileptic in Zambia,” says Glynn. “And because of that courage, the project is working and growing.”

Working in the face of deeply held (perhaps even instinctual) prejudice and fear, progress in epilepsy advocacy always requires the courage and determination of individuals, whether researchers such as Solomon Moshe, or volunteers with epilepsy, such as Anthony Zimba, developing programs to help their countrymen.

There is plenty of courage and determination at this IEC and because of it, progress toward greater understanding--of the brain, the disorder, and for each other--marches forward.