At the eastern edge of the Himalayas, in the remote kingdom of Bhutan, the population remains rooted in the country's Vajrayana Buddhist tradition. People believe in the power of shamans and faith healers, auspicious dates, and signs from the natural world.
When she first visited the country in 2009, Farrah Mateen, MD, PhD, a neurologist at the Massachusetts General Hospital and Harvard Medical School and a member of the American Academy of Neurology (AAN), fell in love with the Bhutanese and their culture. "This is an extraordinary place," she says. "There's so much color and vibrancy, and people are extremely kind."
Dr. Mateen has always looked for opportunities to provide medical care in developing countries like Bhutan, which has no trained neurologists and limited access to sophisticated medical equipment, and where misconceptions about many neurologic conditions are common. Epilepsy in particular is regarded with fear and suspicion, says Dr. Mateen. Some say it's a curse or the work of an evil spirit, and people with the condition are often ostracized from their communities.
To counter those attitudes, Dr. Mateen started the Bhutan Epilepsy Project, which aims to increase awareness, improve medical training, and introduce technology that can help detect and monitor the disease. Her work is chronicled in The Curse, Bhutan Epilepsy Project, a documentary by Bhutanese filmmaker Sonam Yangzom. The five-minute film also shares patients' stories, like that of 13-year-old Karma. Shunned by some neighbors and classmates, the teenager likely died from an accidental injury resulting from a seizure, Dr. Mateen explains. The film won the $1,000 grand prize at this year's Neuro Film Festival, presented by the AAN and the American Brain Foundation at the AAN Annual Meeting in Washington, DC, this past April.
As part of the project, Dr. Mateen and her colleagues are testing a smartphone app that takes electroencephalogram (EEG) readings, which are needed to diagnose and monitor epilepsy patients. Initially they had hoped to test the mobile EEG in 125 patients but wound up enrolling more than 250. "There was so much demand for it and enthusiasm from health care workers and patients," she says. Now, she and other experts are working with local healers and shamans to disseminate correct information about epilepsy, how it's diagnosed, and how it should be treated.
Dr. Mateen says she hopes the project—and the film—will reduce the shame and stigma associated with epilepsy and help people with the condition get the treatments they need, to avoid preventable deaths like Karma's. "I look at these stories and see that there are so many missed opportunities," she says. "There are probably hundreds of thousands of stories like Karma's across the developing world."