Epilepsy silently affects two million Kenyans as stigma blocks treatment

At 13 years, Emmanuel Kagura fell while playing with his peers in school.

He had seizures and was rushed to a facility where he was stabilised and got back to school.

But the seizures persisted for days, and on further medical check-up, including Magnetic Resonance Imaging (MRI) and Electroencephalogram (EEG) revealed he had epilepsy.

He was put on treatment.

But even then, he would still fall at least six times a month.

“At school, I did not understand epilepsy. I linked falling to a lot of pressure and anxiety at school because teachers were always on our case, doing revisions and exams for academic excellence,” recalls the now 25-year-old.

However, while trying to understand the disease, he received a lot of stigma from his friends and schoolmates.

One of the most traumatising encounters was when he was said to have infected his friend back in school with the disease, when he began falling while they played together.

Kagura was isolated.

“Back in school, when a friend of mine began falling and developing seizures, everyone said I had infected him with epilepsy. I was the talk of the entire village,” recalls Kaguri.

But with counselling, he accepted his health condition and has adhered to treatment, reducing incidences of falling and developing seizures. He has not had seizures for four years.

In a single month, Kagura spends about Sh10,000 on medication, a drop from Sh20,000. The Social Health Authority (SHA) partly covers his bill.

Fredrick Beuchi, a Reverend, also shares his chilling experience with epilepsy, from rejection to becoming an epilepsy advocate.

Beuche, born and raised in Kwale, was forced to quit his job as a shipping agent in Mombasa in 2012 to help his mother take care of her young sister, who had epilepsy.

His young sister developed epilepsy after suffering from malaria, a disease that was treated but caused cerebral malaria, which injured her brain.

The sister began manifesting epilepsy symptoms at two years, but was diagnosed at six years.

“My mother was so overwhelmed taking care of my sister. She was experiencing seizures every 20 minutes,” recalls the Reverend.

This was challenging to the family, as the disease was associated with demonic possession, and being a Christian family raised in a mission set-up, it was tough to cope.

“Having my sister develop epilepsy was such a trying moment for my family. It was linked to demonic possession, and some people would say it is a curse from God. When it happened to my sister, we had to think where we had gone wrong as a family to be punished with epilepsy,” says Beuche.

The stigma spilled over to the community, and despite being strong church members, they were taken out of leadership positions at church.

Additionally, individuals with epilepsy are said to have had a relative pass the disease on to them so that they get rich.

But Beuche wanted to prove all this was a myth and a belief, and that the disease is a medical condition.

He enrolled at St Paul’s University to study theology to help demystify this, and later married a wife with epilepsy. They have been blessed with a bouncing baby boy, who is not epileptic.

The Reverend uses his knowledge from the Bible and his personal journey, taking care of his wife and sister, to demystify myths around the disease.

He also has an epilepsy organisation, where he trains communities on epilepsy and helps people living with epilepsy navigate their treatment journey.

“I yearn for a day when the entire community shall understand epilepsy is a medical condition and not a curse. I therefore do all I can to help get here,” says the Reverend.

The two cases are not in isolation; hundreds of people silently suffer from the disease.

The latest study conducted by KEMRI-Wellcome Trust, in collaboration with the World Health Organisation (WHO), KEMRI Wellcome Trust Research Programme, the Ministry of Health, and national partners under the Epilepsy Pathway Innovation in Africa (EPInA) project, has found that at least 2 million people suffer from epilepsy in Kenya.

But despite the high numbers, majority go untreated due to stigma, misdiagnosis, and limited access to care.

The research was done in Kilifi and Nairobi counties.

Findings of the research showed that at least two in 10 people in Kilifi have epilepsy.

In Nairobi, it showed that one in 10 people has epilepsy. But the majority of the population remains unaware they have the disease.

According to lead researcher Dr Symon Kariuki, a researcher at the African Population and Health Research Center (APHRC) and former scientist at KEMRI-Wellcome Trust, more people silently suffer from the disease.

“The country is grappling with a growing invisible burden of epilepsy. Epilepsy is a public health concern, but about 80 per cent of those affected are not receiving treatment,” says Dr Kariuki.

Kariuki explains that it is a neurological condition that occurs following damage to the brain that might occur at birth, childhood, or adulthood, as long as there is damage to the brain.

The condition causes repeated seizures, more so when there is a sudden surge of the abnormal electrical activity in the brain, which can affect how a person moves, behaves, feels, or experiences awareness for a short time.

For years, epilepsy has been narrowly understood as a condition where individuals fall, shake, and lose consciousness.

Emerging research, according to the scientist, reveals dramatic seizures account for only a portion of cases, with nearly half present in more subtle forms, brief lapses in concentration, unusual behavioural changes, or short episodes of confusion, often going unnoticed, especially in school settings.

In an interview, Kairuki explains that undiagnosed epilepsy can impair academic performance, limit employment opportunities, and expose individuals to serious risks, including road accidents.

“In classrooms, some children may lose concentration for two or three seconds and resume as if nothing happened. Teachers may not recognise this as epilepsy,” he explains.

Kariuki maintains that epilepsy is both manageable and, in many cases, preventable.

Research shows that up to 30 per cent of epilepsy cases could be avoided through improved maternal and child health interventions.

Complications during childbirth, infections such as cerebral malaria, head injuries, and conditions like hypertension and stroke are among the leading triggers to epilepsy.

“Delivering in hospitals and attending antenatal care can prevent birth-related brain injuries that may later cause epilepsy,” Kariuki notes.

In malaria-endemic regions such as western Kenya, cerebral malaria is a key risk factor, while in other areas, non-communicable diseases like hypertension trigger the disease.

However, even with high burden of the disease, stigma is a major barrier to the diagnostic and treatment journey.

For example, in some communities, epilepsy is still associated with superstition or demonic possession, forcing patients to suffer in silence, even at workplaces.

“Stigma is carried into offices. Many people live with epilepsy but hide it for fear of discrimination,” observes the scientist.

According to Kariuki, up to 70 per cent of epilepsy cases can be controlled with medication.

However, even with high burden of the disease, stigma is a major barrier to the diagnostic and treatment journey.

Experts in the study note that in some communities, epilepsy is still associated with superstition or demonic possession, forcing patients to suffer in silence, even at workplaces.

To help demystify the disease, the Ministry of Health, with the support of WHO, is training health workers, educating communities, and improving case detection.

Additionally, Community Health Promoters (CHPs) are also being empowered to identify symptoms early and refer patients for specialised care.

“We found that when people understand epilepsy, they are more likely to seek treatment,” says the researcher.

At least 30 percent of people who do not respond to medication were found to be as a result of late diagnosis or underlying conditions such as mental health disorders.

Diagnosis is done through clinical history, brain activity tests (Electroencephalogram), Brain imaging like Magnetic Resonance Imaging (MRI), and blood tests.

Treatment for the disease includes specialised diets, brain stimulation therapies, or surgery.

Kariuki adds that epilepsy surgery, though limited in Kenya, offers a potential cure for select patients, particularly those whose seizures originate from specific parts of the brain, such as the temporal lobe.

Beyond the medical challenges, epilepsy carries a heavy psychosocial burden; for example, patients often face discrimination, social exclusion, and barriers to education and employment.

In some countries, like Tanzania, laws even permit divorce on the grounds of epilepsy, an issue Dr Kariuki says continues to contribute to stigma.

In Kenya, Kariuki raises questions about whether undiagnosed epilepsy could be contributing to traffic accidents, calling for stricter screening and policy reforms in driver licensing.

“If someone has active seizures, they should not be driving. But if the condition is well controlled, they can safely operate vehicles. This is an area that needs attention by the National Transport and Safety Authority (NTSA),” he says.

He adds, “Does NTSA medical check-up list include epilepsy?’

To help identify cases, experts maintain that awareness is key.

Dr Neerja Chowdhary, a technical officer in the neurological, sensory, and oral conditions unit department of NCDs and mental health at WHO, adds that integration of care and allocation of more resources is key in addressing epilepsy burden in Kenya and globally.

Human resources, she says, is also an issue in low-income countries.

“We need to address stigma, policies, and have medicine not only available, but also affordable,” says the WHO representative.