By Promise Eze
BAMENDA, CAMEROON— Ten years ago, 35-year-old Bah Blaise started having epileptic convulsions, a common brain condition that causes repeated seizures. When this occurs, according to medical records, parts of his brain receive a burst of abnormal electrical signals that temporarily interrupts normal electrical brain function. This causes uncontrollable movements of the body and renders him unconscious.
In his village, Oku, located in Bamenda, Cameroon’s Northwest region, epilepsy is called “awonkwoo,” which means “fall and die.” Because of the association of epilepsy with death, Blaise says people, including friends avoid him.
His condition also prevents him from securing a well-paying job. According to Blaise, no employer was willing to handle his situation and this made life very complicated, so much that he could barely afford prescribed medication.
Every attempt to have a normal life was a drag for Blaise. His desire to have a romantic partner was also hard to fulfill.
“All the ladies I have tried to woo run away once they find out I’m epileptic” he said during an interview.
In Cameroon, it is believed that demons, curses, and witchcraft are the cause of epilepsy. The disease is non-communicable but the fear of contracting it fuels the social isolation of people living with epilepsy.
About 50 million people live with the disease making it one of the most common disorders of the nervous system. Nearly 80% of people with epilepsy live in low- and middle-income countries and in Cameroon, it is a serious public health problem. One medical journal suggests that the prevalence of epilepsy in the country might be the highest in the world.
Experts say that epilepsy has no identifiable cause nor cure. However, traditional beliefs constitute a major challenge to getting treatment.
“In some parts of Cameroon epilepsy is believed to be a communicable disease that can be transmitted from person to person by contact with the savila of the affected person,” said Dr Morane Mbongnu, a resident doctor at the Nkwen Baptist hospital, Bamenda. These erroneous beliefs leave those with epilepsy isolated from schools and friends.
Blaise was forced to live a solitary, single life, and the stigma he faced made him feel life was not worth living.
Fighting The Stigma, Changing The Narrative
Things started turning around for Blaise in May 2022 when he met with Ms Mundih Noelar Njohjam; the founder and president of Epilepsy Awareness, Aid and Research Foundation (EAARF); a nonprofit fighting to reduce stigma and discrimination against people living with epilepsy.
He was taken aback at how humanly EAARF treated him—very unlike how he had been treated. Volunteers would check on him periodically to ensure that he was taking his medications, he even had his rent paid for and some of his basic needs met.
“The EAARF provided necessary aid and I was made to understand that epilepsy isn’t a death sentence,” Blaise told Social Voices.
EAARF discovered that people with epilepsy were often victims of extreme levels of stigmatization. Some were sexually abused and children living with epilepsy were often chased out of school and access to quality healthcare was difficult.
To address this, the initiative focuses on improving the health outcomes and wellbeing of people living with epilepsy. With 187 volunteers, EAARF operates from the center of Bamenda, the northwest region of Cameroon reported to have the highest cases of epilepsy in the country.
The objectives of EAARF is hinged on five pillars: advocacy against stigma, economic empowerment for women living with epilepsy, free basic health care services for epilepsy patients, capacity building for health workers, delivering health services to people living with epilepsy and research to understand the best ways to tackle the illness.
“We also have a platform called Youth Against Epilepsy where we train young people on how to raise awareness in their communities,” Ms Njohjam said during an interview.
The widely-held belief that epilepsy is a spiritual problem and not a health issue drives people to prayer houses and native healers to seek for a cure and this could be very dangerous. Drugs can control seizures but failure to take medications could trigger more seizures which could lead to death. However, EAARF has made successful attempts to convince religious leaders and their followers that the illness is not a spiritual problem. Occasionally sensitization programmes are carried out via radio stations and social media.
26-yr old Leinjung Erica, a nurse, started suffering from epilepsy when she was in secondary school. At the time she was just 14. One of her aunts alleged that she suffered epilepsy because she was a witch.
There is a high level of perceived stigma among children and adolescents with epilepsy, which has severe debilitating effects and affects school attendance.
“My aunt pressured my father to pull me out of school because of my seizures. She claimed I didn’t deserve to be educated. My father almost withdrew me from school,” Erica recalled.
Erica, who now works as a volunteer with the EAARF, uses her story to inspire people living with epilepsy in her community, and even on social media.
Once in two months, she leads other volunteers to meet with the support group of the nonprofit made up of women and children with epilepsy.
“I’m not scared of telling anyone about my condition. I tell people who live with epilepsy or have children living with epilepsy that I’m a survivor. If I can stand strong despite all I’ve been through, they too can stand,” she said.
However, Changing The Narrative Comes Along With Challenges
The initiative has recorded some successes. Many of the volunteers before joining the nonprofit used to stigmatize people who suffer from epilepsy. But now there is a change of mindset.
For instance Chung Oliver, a volunteer with EAARF, told Social Voices that he once used to stigmatize a friend of his but he now advocates for the rights of people living with epilepsy.
Ms Njohjam, a doctor at the Nkwen Baptist hospital Bamenda, noted that there’s been positive response to their campaigns and advocacies as people with epilepsy are now thronging to the hospital in search for help.
“We’ve reached out to more than 500 people with epilepsy and a good number of them are now breaking cultural barriers by coming to seek help in the hospital where I work,” she said.
Many patients are opening up to receive treatments because they now believe that epilepsy is not a spiritual affliction. EAARF also provides free anti-epileptic drugs monthly to over 40 underprivileged persons living with Epilepsy.
Recently, the initiative set up an Epilepsy Clinic where over 200 persons with epilepsy receive adequate care, as a direct response to weak healthcare systems that don’t prioritise prevention and treatment.
But EAARF’s efforts are frustrated by poor government response, shortage of trained health workers and inadequate anti-epileptic drug supplies.
Worse, a good number of people living with epilepsy still visit traditional healers because there are very few neurologists in the region—and high costs of medications.
Dr Morane Mbongnu argued that “there has been no form of government sponsored research or funding going on to alleviate the pains of people living with epilepsy in Cameroon. Even the medications are very scarce to get.”
Many of EAARF volunteers still face stigmatization when they go out for outreaches in communities and struggle to create the right awareness.
“I remember when I posted a content about epilepsy on Facebook. People began asking me what I had to do with epilepsy,” said Salamatu Lawal, a Volunteer with EAARF.
The current Anglophone crisis in Cameroonian makes it very difficult for the nonprofit to carry out outreach in rural communities plagued by the Insurgency.
Funding is also a big challenge. Ms Njohjam said that the funds used in keeping the activities of EAARF alive are personal contributions from the volunteers and gifts from donors.
However, creating awareness about epilepsy in a society laced with mystical beliefs may seem like pouring water on stone, but gradually the efforts will definitely pay.
By arming itself with kindness and diligence EAARF teaches the example that it’s possible to eliminate adverse cultural beliefs and let victims live freely.
In spite of the plethora of challenges, Ms Njohjam affirmed that she is not giving up on the fight.
“I am passionate about helping people living with epilepsy,” she said.
This story was produced in partnership with Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organisation dedicated to rigorous and compelling reporting about responses to social problems.