By Linda Azarian
In March of this year, our very own Dr. Blanca Vazquez took a remarkable trip to the Ecuadorian Amazon to help treat, train and educate patients with epilepsy. With a team of other U.S. medical specialists and health care professionals, Dr. Vazquez was in the Amazon for one week and had many astounding and sobering stories to tell of the experience.
When Dr. Vazquez was asked what affected her most about the trip, she talked of the deeper understanding she now has of the stigma that epilepsy has carried for centuries, and why this condition can produce such strong, negative reactions. As she tells us, myth and folklore are extremely powerful and can severely determine the daily care and critical issues of one’s life.
The Amazon region lacks many resources in health care and patients with epilepsy might need to travel 200 miles to the capital city of Quito to see a doctor. In the small town of Tena, located five hours southeast of Quito, an American team of physicians worked with the doctors and staff of the local public hospital for one week. The team brought with them two portable EEG machines, medication and supplies, all made available free-of-charge to the patients. The Peace Corps also got involved by helping transport patients from very long distances to Tena. In one week, 475 patients with neurological problems such as epilepsy and cerebral palsy were evaluated.
The lack of access to proper diagnosis and treatment, long distances to travel, and the local population’s lack of economic resources prevent patients in the Amazon from obtaining accurate analysis, education and management of these neurological conditions. With these limitations, the power of superstition and myth take over with their own particular rationalizations of why people have seizures. As a result, epilepsy is either seen as a mental illness or a spiritual problem typically treated by the local shaman, often with such dire results as people to release them from possession by the devil. In fact, the number one cause of death in this region for those with epilepsy is falling into a fire pit while being exorcised for seizures.
The main focus of the mission soon became the separation of reality from myth; to decrease the gap in epilepsy treatment while increasing access to neurological care by establishing partnerships among visiting consulting neurologists, local staff and the community.
A goal such as this can only be accomplished by educating those people who are on the front lines of first aid. As Dr. Vazquez will tell you, “Sustainability of the mission is what you leave behind”. A large part of the mission, therefore, was to give educational talks on epilepsy management to local physicians, medical students, nurses and all first aid responders.
After breakfast at 7:00 a.m., Dr. Vazquez and the rest of the team would work with patients at the Center, break for lunch and then continue to meet with patients until 6 p.m. With radio as the most immediate method of communication in the Amazon, Dr. Vazquez or another member of the team would then give a radio interview asking residents to visit the Center while also discussing issues related to epilepsy. A dinner break would follow and, afterwards, the team would gather to review all the EEGs of the day and then meet with various local groups for a training workshop. This average work schedule would end no earlier than midnight.
Informing people that they should not be afraid of someone having seizures was just the beginning of the training process. Dr. Vazquez will tell you that the groups who most resisted the workshops were the police and firefighters, despite the fact that they are often the first respondents called when someone has a seizure and unfortunately the least educated to its causes. Understanding the causes and conditions of epilepsy and learning how to respond to a person in an emergency situation were imperative. With the hope to ensure medical sustainability once the American team left Tena, local pediatricians and general practitioners became actively involved in the daily patient consultations and were instructed on follow-up care for patients who were started on treatment. Email contact and tele-medicine programs for further follow-up were established as a legacy of this trip. As Dr. Vazquez says, “The mission has just begun in assuring continuity of care for the patients seen during the trip”.