Residents of the Ecuadorian Amazon jungle had their first exposure to modern neurology this past March when an epileptologist member of the AAN organized the first neurological medical mission there.
Patricio Sebastian Espinosa, MD, who completed a fellowship at the Harvard Medical School Brigham and Women's Hospital in 2008, led a group of 30 US volunteers — neurologists and other physicians, EEG technicians, physical therapists, and medical students — to Tena, a small town in the Amazon jungle, home to indigenous farmers and artisans.
There are no neurologists in Tena, the capital city of the Napo Province, and the nearest facility for neurological care is in Quito, which is approximately 200 kilometers, or a five-hour bus ride away. Because the community in this area is very poor — the unemployment rate is 60 percent, and more than 70 percent of the population live below the national poverty line — they cannot afford to travel to Quito.
But in seven days, the clinic staff in Tena saw 475 patients with neurologic complaints — including seizures, developmental disabilities, cerebral palsy, and migraines, and performed EEGs on 127 patients — 110 of which were abnormal.
Dr. Espinosa chairs the Quito-based Centro Internacional en Neurociencias (Center for International Neurosience), a nonprofit organization that, every two years, brings US neurologists and neuroscientists to Ecuador for a meeting. (The next meeting is in April). At the 2008 meeting, US physical therapist Nicole Falcone, founder and director of the PediHabilidad rehabilitation program in Tena, asked Dr. Espinosa about the possibility of providing neurological consultation with her patients at a public hospital in the Napo Province.
Dr. Espinosa spent a year working with Falcone and medical student Aaron Berkowitz to obtain donations and recruit volunteer physicians, medical school students, and translators (the language of the indigenous community is Quechua, though many speak Spanish and English).
Upon arrival, they provided consultations, educational workshops for primary care staff of the hospital and first responders (policemen, firemen and school teachers) about the care of patients with neurological problems, and — with the help of the Ministry of Health in Tena — distributed antiepileptic drugs from the local hospital pharmacy free of charge.
Some of the patients seen by the volunteers had consulted with shamans, who are sought out to cure the attacks through traditional remedies and rituals, said Dr. Espinosa. Many had treatable conditions and had been seen earlier by a primary care physician and had been referred to a specialist, but could not afford to pay for transportation, consultations, and tests.
One 24-year-old patient was brought to the experts from the jungle in status epilepticus. “His family members had to walk for one hour and then travel by canoe for two hours to reach a car that would take them to the hospital,” said Dr. Espinosa. “The patient had five convulsive seizures without regaining consciousness and was unresponsive upon arrival. We performed a stat EEG and prescribed the appropriate medication, and the next day the patient woke up with no neurological deficits. This patient had been seizing daily since childhood.”
Dr. Espinosa plans to conduct two neurologic care missions per year — the next two are scheduled for December and next March. “In the meantime,” he said, “we have a telemedicine program that offers immediate neurological consultation to our patients in Tena, which will also help ensure follow-up for newly diagnosed patients and maintain the continuity of care. We teamed with Hospital José Maria Velasco Ibarra, which is run by the Ministry of Health in Ecuador, and they provide free medications to our patients.”
The US volunteers worked closely with the local hospital to begin an ongoing consultation service for these patients, said Dr. Espinosa.“We believe that this collaboration will lay the groundwork for the sustainability of neurological care in the region.”
Planning for the team visits in Ecuador, which would have been difficult a few years ago, was facilitated by Internet video conferencing and e-mail, Dr. Espinosa said.
Yet providing care from rural areas was challenging, because many patients traveled from remote areas and needed to be seen and sent away with their test results and medications before sunset in order to return home. “We also had to coordinate with other hospitals to perform special tests such as MRIs and CT scans as they were not available locally.”
Through the public workshops, the US experts encountered a general lack of public awareness about epilepsy and how to respond to a seizure. “Traumatic brain injury from motorcycle accidents was a frequent etiology in patients with epilepsy, as many patients do not use helmets for high risk activities,” Dr. Espinosa noted.
Misconceptions also abound — for example, that patients are faking their seizures or having attacks of hysteria, and that it is reasonable to beat them with a poison ivy-like plant called ortiga to stop the seizure. The indigenous people use ortiga as a punishment for naughty children and thieves.
Seizures are often thought to be contagious, as well. Children with epilepsy are not in school because of the fear and embarrassment of having a seizure during class, and teachers have no first aid training for seizures; there are also no school nurses).
Further education is so important, said Dr. Espinosa, particularly regarding how to respond to epilepsy and dangerous neurological symptoms that require immediate attention (such as meningitis, for example). Further education and intervention in pre- and peri-natal care could also reduce obstetric problems that can later lead to neurological disabilities, he added.
“It would be ideal to have a neurologist work and live in Tena or to make frequent trips to see patients in the region,” he said. For now, “neurologists can help by joining us in these clinical and educational activities, along with EEG technicians, neurology residents, medical students, and volunteers.”
For more information about the project and how you can help, visit www.cien-ecuador.org.