Epilepsy, a global perspective

For those of you don't know, technically I am epileptic. I had surgery to remove the brain tumor that was causing seizures 3 years ago, and I haven't had a seizure since, even though I am no longer on anti-seizure medication. Currently it has little impact one me. I'm terrified of strobe lights and I know I can get out of any future military drafts, oh wait I already moved to Canada! But I am still always interested in news about epilepsy and seizures and a few days ago I came across this article about epilepsy in the developing world.

I've known since day 1 that I was lucky to get the treatment I did. Some of the most recommended neurosurgeons in the county +great health insurance means I had to make very few lifestyle changes following my diagnosis. Not so for epileptics in Sierra Leone, who have suffered such "treatments" as drinking kerosene. The most heart-breaking to me is the stigma. Having a seizure is scary. It is your brain acting without your consent, doing things that you don't remember. Its physically and emotionally painful and extremely draining. To have to face all that and then be be forced into the margins of society, seems to me too much to bear. This can cause children to drop out of school, to avoid the mockery of students, further isolating and stigmatizing them.

I had no idea that 90% of all cases of epilepsy occur in the developing world, but based on what I know about international health, I shouldn't be that surprised. That the only drug available is phenobarbital, often unaffordable at $2 a month is saddening, but also not a surprise. I spent the past 2 years immersed in public health, and the world's poorest countries are plagued with some of the most heartbreaking health problems. While treatment for epilepsy for all should be the ultimate goal, dealing with the stigma would be the most feasible, cost efficient and perhaps even the most important. I am looking into the Epilepsy Association's Africa programs, if anyone wants to donate or become more involved, please do let me know.

If this is a topic you are also interested in I recommend the book "The Spirit Catches You and You Fall Down" one of my favorite books, and it was even before I was epileptic. This true story follows a Hmong refugee family resettled to the U.S. deal with their daughters epilepsy. The books chronicles the family's spiritual beliefs and treatments and how they clash with western medicines own. Very little judgement and truly a great read.