The ‘epilepsy warriors’ breaking down the barriers in Cameroon
Courage Vidzengsi had her first epileptic seizure when she was eight. Jerking uncontrollably, she bit her tongue and fell to the ground at the children’s recreation centre. As her seizures became more frequent, her family took her from their home in the city of Bamenda back to her family’s village in Cameroon’s Northwest Region.
There they saw a traditional healer, known as a “Gambé man”, who would “cleanse” the young girl.
Vidzengsi recalls: “The cleansing process took three days. He brought a chick and dipped it in a calabash full of palm wine and instructed us to suck the feet. He mixed egusi [melon seeds] with fufu [mashed cassava] and oil, put it on leaves, and asked us to eat. Herbs and grasses were tied on our feet and hands.”
But her condition got worse, leading to another visit to a traditional health practitioner at a different shrine the following year. This time she was told to bathe naked in a river.
The prevalnce of epilepsy in the African continent is far higher than in the industrialised world. In Cameroon, rates are so high that it has now become a national public health concern, yet stigma arising from the belief that the condition is a “curse” poses a barrier to treatment.
Epilepsy is a non-communicable brain disease causing seizures that can lead to accidents or injuries. It affects about 50 million people globally, with nearly 80% of patients living in low-and middle-income countries, where they often have poor access to treatment.
Epilepsy has no identifiable cause or cure, but medication could allow many patients to live without seizures. However, traditional and religious beliefs in Africa hinder access to treatment.
In many parts of the continent, seizures are still seen as being caused by curses, demonic possession or witchcraft, leading people to seek remedies through prayer or traditional healers.
According toDr Yusuf Yakub, a consultant neurologist in Nigeria’s Delta state, the condition can worsen without treatment and even lead to death.
Leo Igwe, a human rights advocate, says: “Lack of understanding as to why people suffer epilepsy makes them think that it is a spiritual problem.”
Igwe, a Nigerian humanist who founded the organisation Advocacy for Alleged Witches to “save lives of those affected by superstition”, believes stigmatisation of people accused of witchcraft or of being afflicted by demons will only become more widespread unless governments intervene.
The myth that epilepsy is contagious only intensifies the stigma, creating obstacles to employment, hindering marriage prospects, and limiting access to healthcare.
***
Vidzengsi is now 27 and a nurse. She juggles her work with frequent visits to communities in Bamenda and the wider region to combat stigma around epilepsy. She started her own treatment in 2008, three years after her first seizure, after her mother was convinced by a health worker that epilepsy was a medical condition, not a spiritual one.
On her calls, she tells her own story, hoping it will encourage people with the condition to seek treatment urgently.
Vidzengsi is one of 148 volunteers with the Epilepsy Awareness, Aid and Research Foundation (EAARF), a nonprofit organisation based in Bamenda.
The volunteers are mainly people living with epilepsy – whom EAARF refers to as “epilepsy warriors” – and also health workers. They operate in communities where there is a high prevalence of the condition, providing medical and material assistance. The organisation also trains health workers in epilepsy management.
Leinjung Erica Nkfusai, a nurse from the Oku area of north-west Cameroon who has epilepsy herself, volunteers with EAARF, using community radio broadcasts to challenge perceptions of the condition.
Her passion is born out of her own experience. Her father was advised to withdraw her from school when she was 14 – her aunt insisted the child’s seizures were due to witchcraft.
“My father made me feel like he was wasting his time and efforts on me because of what his sister told him,” says Nkfusai, who is grateful that one of her uncles was able to convince her father not to take her out of school.
“Women have lost their marriages because of epilepsy; youths have been abandoned. We have had people who died in their rooms because they had epilepsy and could not open up to friends. You just find them dead in their room,” Nkfusai says.
“I am a human being, not a disease,” is her message, she says, expressing her excitement at listeners calling the show to say they will no longer stigmatise epilepsy patients and are ready to support them.
Dr Mundih Noelar, who founded EAARF in 2018, says: “For most people with epilepsy, the stigma was more of a problem than dealing with the seizures. I saw people who had been ostracised from their community because they had epilepsy. I saw young children who dropped out of school.
“I want people with epilepsy to be accepted; they should not be treated like outcasts,” she says. “It gives me great joy to see people with epilepsy at the forefront of advocacy, talking about their condition and encouraging others to come out of hiding.”
Nine years ago, at the 68th UN World Health Assembly, Cameroon was among 194 countries that agreed to step up efforts to tackle epilepsy. Despite this, Noelar says government support for people with epilepsy is minimal, leaving patients reliant on local charities for assistance.
“In Cameroon, the cost of epilepsy drugs remains relatively high, and there is little effort by the government to create awareness about the condition,” Noelar says.
A basic anti-seizure drug can cost the equivalent of £8 a month in a coun
try where the basic minimum wage is only 41,875 CFA francs a month (£55). “Quite often,” says Noelar, “I’m forced to pay for the medication because you diagnose a patient and they cannot afford it.”
Eddie Chengo, an epilepsy specialist with the Foundation for People with Epilepsy in Kenya, says the international community can reduce the burden of the disease across Africa by helping to make the medicine less expensive.
Cameroon has a crippling health crisis, worsened by seven years of civil war. Exacerbating this is the stream of thousands of health workers leaving the country for better opportunities abroad. Noelar says this has led to a shortage of neurologists in the country, in a continent where they were already scarce.
Yet efforts to tackle the condition are paying off, even beyond the boundaries of Cameroon, she says. A Tanzanian, Shoel Sabir Mohammed, found a lifeline when he stumbled on EAARF online. He had contemplated ending his life following rejection by his family and losing his job because of recurrent seizures at work.
Joining the EAARF’s community on WhatsApp gave him a sense of belonging and support. He now hopes to use social media to create awareness about epilepsy in his own country.
“It has given me a purpose to educate society,” he says.