After neurology training at the National Hospital for Neurology and Neurosurgery in London, Amza Ali, MD, returned to Jamaica in the 1990s to continue the neuroimmunological research he had being doing in the UK on an endemic condition called tropical spastic paraparesis.
But he soon noticed that the majority of the patients in the general neurology clinics either had epilepsy or conditions that resembled epilepsy.
“These problems were really clogging up the system, and I realized that there was a need to do more for epilepsy…. Fate intervened,” Dr. Ali said, when he heard a keynote lecture in Jamaica by Timothy Pedley, MD, AAN president-elect and professor of neurology at Columbia University. That meeting led to his pursuing an epilepsy fellowship at Columbia University in New York. Fate further intervened when he was contacted by William Theodore, MD, chair of the NIH Clinical Epilepsy Section, inviting him to consider bringing “epilepsy out of the shadows” in Jamaica.
Dr. Ali returned to Jamaica in 2001, and has been working on epilepsy “full-time” ever since. He is the founding and current president of the Jamaican League Against Epilepsy (JLAE) — a branch of the International League Against Epilepsy (ILAE) — and co-chair of the Epilepsy Pre-surgical Evaluation Group at the University Hospital of the West Indies in Mona.
EPILEPSY AND AN AGING POPULATION
The prevalence of epilepsy in Jamaica is not particularly high, said Dr. Ali: “It borders on 6 per 1000,” which is comparable to developed countries. The principal reason is that “in Jamaica, we don't have infectious causes of epilepsy,” he explained. “For example, in many parts of the developing world neurocysticercosis is a big cause of epilepsy — we don't have that problem.”
But offering the best possible care is challenging in the face of limited resources. “There are only 10 neurologists in the island of Jamaica with a population of 2.7 million people. In fact, that scenario is worse if one considers the whole English-speaking Caribbean, where there are in all no more than twenty.”
To improve access to care, Dr. Ali and other Jamaican neurologists have been working on a major education initiative in Jamaica, targeted at both the general population and health care professionals.
For the general population, much of the effort thus far has been centered on reversing the beliefs that create stigma. “I think stigma got in the way a lot in terms of people coming forward for evaluation and treatment. And so we have been educating people about epilepsy — that it is in fact a medical, physical condition and not one due to possession or any other supernatural phenomenon,” Dr. Ali said. With the help of the JLAE and the Jamaican Epilepsy Association, the local chapter of the International Bureau for Epilepsy (IBE), Dr. Ali and colleagues enlist the media — newspaper, TV and radio — as well as public meetings for this initiative. Right now, he said, the groups are working on sending small groups into schools in the western part of the island, which has not been as involved in the activities as Kingston and surrounding areas.
Dr. Ali and colleagues also saw a need to teach doctors “about the mimickers of epilepsy. There are many medical conditions that can, for example, present with transient alternations of awareness or motor phenomena that can superficially look like epilepsy and yet are not.” Their goal is to both address the management of epilepsy, as well as to define the medically intractable patients — and teach how to evaluate those patients. A long term goal, Dr. Ali said, is to train specialized epilepsy nurses as well as EEG technologists for the region.
Through fundraising efforts, “we were able to launch a two-bed video-EEG unit in 2004, which has helped us to identify those patients who don't have epilepsy and the specific epilepsy syndrome in the patients who do — as well as to help guide their treatments,” Dr. Ali said. He and colleagues aim to use this video-EEG unit as part of the evaluation process for patients who need to undergo surgery.
Dr. Ali and colleagues are also developing a telemedicine initiative in the hopes of bringing the English-speaking Caribbean islands together to increase the understanding of epilepsy and help identify candidates for surgery. They hope to use the telemedicine program, as well, to create a mentored relationship with the US and Canada for didactic-type lessons.
“We are going to develop a telemedicine link between Yale and the University of the West Indies in Kingston, Jamaica,” Dr. Ali said. Here, he said, Dennis Spencer, MD, the Harvey and Kate Cushing Professor of Neurosurgery and chair of neurosurgery at Yale, has been a major facilitator of the project. “He and his wife, the late Susan Spencer, MD, have always been very interested in the project of setting up a comprehensive epilepsy care program in Jamaica and particularly in developing an epilepsy surgery program.”
The telemedicine project should be up and running by September 2011, he said. Core members of the JLAE, particularly Ivor Crandon, MD, professor and chief of neurosurgery at the University Hospital of the West Indies and co-chair of the presurgical evaluation group, will present epilepsy cases for discussion — and eventual possible surgical management — to members of the Yale faculty including Dr. Spencer. The telemedicine facility will also expectantly be used for lectures from many centers in North America.
Dr. Spencer will initially work with local neurosurgeons in Jamaica on their first several surgical epilepsy cases. With his assistance, a Jamaican senior resident in neurosurgery has been identified for dedicated epilepsy surgery training, Dr. Ali said. “He's obtaining additional neurosurgical training in the UK right now but will be going over to the US for a fellowship in epilepsy surgery, and then will return in 2013 as a dedicated epilepsy surgeon,” which will be an important step for the program.
Eventually, Dr. Ali said, this effort at international partnership will be expanded out — it will be a “hub and spoke arrangement” where the first relationship will be between Yale and Jamaica, but then it's going to grow to involve Dell Children's Medical Center in Austin, TX, for pediatric epilepsy surgery with the support of pediatric neurologist Dave Clarke, MD, who was chosen in 2008 by the North American Commission of the ILAE as Visiting Professor to the JLAE. In time, it will involve the other Caribbean islands as well — particularly the ones that have campuses of the University of the West Indies.
The AAN recently announced the 2012 Susan S. Spencer Clinical Research Training Fellowship in Epilepsy, in honor of the late Susan S. Spencer, MD, an internationally-renowned expert in epilepsy and epilepsy surgery. This fellowship will provide $55,000 per year for two years, plus $10,000 per year for tuition to support formal education in clinical research methodology at the applicant's institution or elsewhere. Funding is awarded by the AAN Foundation, the American Epilepsy Society, and the Epilepsy Foundation. For more information and to apply, please visit:http://bit.ly/qm3F0K.