A blog by Promise Forsuh
Twenty-five-year-old Keith Nfore* has suffered the effects of social stigmas connected to epilepsy. This, he tells me, started with his first seizure at the age of 10 when he was left to die because no one present understood what was happening or how to help him. Fearful that he had a communicable disease, his friends started to distance themselves and he felt abandoned and alone.
In his local community in Cameroon’s Northwest region, the term for epilepsy “awo-nkwoo”, means “fall and die”. But this association of his condition with death has inspired Nfore to live life to the fullest.
He explains that his seizure patterns have changed over the years: “I used to have seizures weekly, but now I get seizures after a month,” he says. “And when I get seizures, it could occur like three times in a day.”
Nfore’s mother says his family will often stay up all night to assist him and keep him safe. The unpredictability of his seizures and the frequency with which they can occur make it difficult for him to hold down a job or have an intimate relationship.
Although there is no known cure for epilepsy, Tegou Daniel Djoyum, founder and CEO of the Global Organization of Health Education (GOHE) says that up to 70 percent of people with epilepsy can control their seizures with phenobarbital, a cheap and available drug that can cost as little as 3,000 Central African francs, $6.45 USD, for a year’s worth of treatment.
With its headquarters in Colorado, the GOHE organisation was founded by a group of healthcare professionals in the field of epilepsy to train people around the world on neuro-diagnostics.
“We have realised what we intended, which was to use online and very few travels to teach healthcare professionals around the world to take care of epilepsy,” says Djoyum. Focusing on a field that is often underrepresented in the global south, the GOHE team is providing “EEG” (Electroencephalogram) exams, which are used to diagnose neurological disorders such as epilepsy and, which are not available in most developing countries.
Cameroon’s Ministry of Public Health officially recognised epilepsy as a public health issue in 2001 and has included the condition in a Health Sector Strategic Plan. The Department of Disease Control has also developed the National Epilepsy Control Program to promote research.
Organizations like GOHE are also working hard to spread information about epilepsy, reduce its stigma and promote treatment. But institutions providing care for people with the condition are few and far between, and nonexistent in most communities. This is not just a problem in Cameroon but across Africa.
Some people turn to religious and traditional leaders for help. According to Malu Juli, a traditional healer, many people with epilepsy come to him for treatment. He says most patients come during the dry season, from mid-October to mid-March, and at the end of the month when there is a full moon. This he adds, is because of the belief that spiritual factors cause epilepsy.
Cameroonian-born Djoyum is hoping that GOHE can support the provision of more services for the condition by collaborating with the World Health Organization to train health care officials. GOHE has played a role in tackling epilepsy after the adoption of a 10-year intersectoral global action plan on neurological disorders.
During the 73rd edition of the World Health Assembly, which took place on November 12, 2020, GOHE also adopted a resolution that includes taking steps to expand universal health coverage. This means addressing the current significant gaps in the promotion of physical and mental health, and the prevention, early detection, care, treatment, and rehabilitation of epilepsy.
*Keith Nfore is a psuedonym
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