Guest post from Sharona Ben-Haim, MD
Neurosurgical Fellow at Oxford University U.K.
In the United States, society accepts the diagnosis of epilepsy and embraces its treatment, which is usually medical, although in refractory cases may be surgical. However, for the more than 10,000,000 people on the continent of Africa who suffer from epilepsy, 75-80 percent are not treated despite the availability of efficacious and affordable medications.1,2 Unfortunately, these people fall victim not only to the treacheries of their disabling disease, but also an equally incapacitating social stigma which leaves them frightened to seek medical treatment. These patients, as well as their families, are shunned from society and may be ostracized from their communities. Epilepsy is widely believed to be the result of an evil spell or a contagious disease, which may even prevent a person from helping or even touching someone who has fallen during a seizure.
Dr. Edie Zusman (far left)
In 2012, neurosurgeon, Dr. Edie Zusman, along with John Obegolu, Director of the Neuroscience Medical/Surgical Nursing at Eden Medical Center in Castro Valley, California, created the Nigeria Epilepsy Care Advancement Program (NECAP) to try and address Nigerians beset by epilepsy. By August of 2013, a group of physicians, nurses, and volunteers from Northern California set out to treat 100 patients between the ages of 16 and 80 at the RISE Clinic in the Anambra state of Nigeria. They provided antiepileptic medications to those patients in need and arranged for monthly patient follow-up with the clinic. In addition to directly treating patients, they structured an alliance that included pharmaceutical companies and government agencies to create a sustainability program for future procurement of medications at affordable prices. They worked diligently to educate the community, including speaking directly to patients, performing interviews on radio and television, building awareness of both the disease process and its manifestations, and providing citizens in the community an avenue for assistance. “Most villagers believe it is a form of witchcraft,” said Mr. Obegolu. “Epileptics are shunned by society and forbidden to marry or even to hold jobs. Many people in Africa still believe that epilepsy is the result of some crime committed by their ancestors or the result of a voodoo spell.”
NECAP went beyond the single mission in August 2013. They also:
- Established a five year initiative aimed at advancing epilepsy care in Southeastern Nigeria;
- Designed an ongoing education program for the local healthcare providers at the RISE clinic, as well as specialists in the community and other parts of Nigeria; and
- Hold a monthly teleconference to discuss refractory and otherwise difficult cases with the healthcare providers in Nigeria.
NECAP has extended beyond the patients of the RISE clinic; thus laying the groundwork to change the cultural stigma of epilepsy. Their work allows patients and providers to feel emboldened to speak publicly about this disease process, making headway for more patients to get treatment and to receive acceptance and support from their local communities. The RISE clinic is now a center of excellence in Nigeria for the evaluation and treatment of individuals with epilepsy. They continue to expand their impact on the local community and are working collaboratively with the National Hospital in Abuja to encourage further education. “We laid the foundation to achieve the collaborative goal of treating not only the patients in our clinic, but rather the 2 million patients in Nigeria with epilepsy,” said Dr. Zusman, “with the ultimate goal of making meaningful and transformative change for the lives of people in Nigeria.”
We are proud of the face that Dr. Zusman and her colleagues have put forth both in their local community and abroad. Their creative patient-centric approach to treating epilepsy in Nigeria reinforces the important role that neurosurgeons play in creating a collaborative environment for the care of all neurosurgical diseases.
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I applaud the work of Dr. Zusman, Director Obegolu and the NECAP program. The combination of community education and technology integration is an outstanding model for similar interventions elsewhere.