Nearly two million Kenyans may be living with epilepsy, yet the majority remains undiagnosed and untreated due to stigma, low awareness and limited access to specialized care, new research shows.
Health experts say the findings highlight a significant hidden burden of epilepsy in Kenya and underscore the urgent need to strengthen diagnosis, treatment and public education.
The evidence is emerging from the Epilepsy Pathway Innovation in Africa (EPInA) project, collaboration between the World Health Organization, the Ministry of Health and the KEMRI-Wellcome Trust Research Programme alongside other national and international partners.
The initiative aims to improve epilepsy care through research, digital health innovations and stronger health systems.
As part of these efforts, partners convened a high-level dissemination meeting and a two-day workshop in Nairobi to support implementation of the WHO Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders.
Hidden burden
According to Simon Kariuki, principal investigator of the EPInA study and a research scientist at the African Population and Health Research Center, epilepsy remains one of Kenya’s most overlooked public health conditions despite its high prevalence.
“Epilepsy is very common. About 2percent of the population may have epilepsy,” Kariuki said. “If you translate that into Kenyan numbers, it means close to one million and possibly up to two million people are living with the condition.”
Earlier estimates were lower because research focused mainly on generalized tonic-clonic seizures the most visible form of epilepsy where a person loses consciousness and experiences severe convulsions.
However, newer studies show that many other forms of epilepsy exist, including seizures that cause subtle behavioral changes or brief lapses in awareness.
“These less visible forms can make up nearly half of all epilepsy cases,” Kariuki said. “They may not always be obvious, but they can significantly affect daily functioning, school performance and quality of life.”
Large treatment gap
Despite the high prevalence, about 80 percent of people with epilepsy in Kenya do not receive treatment.
Experts attribute this treatment gap to stigma, low awareness that epilepsy is treatable, a shortage of specialists and inconsistent availability of medication.
In many communities, epilepsy is still associated with spiritual or supernatural causes.
“In some cultures epilepsy has historically been linked to possession or demonic forces,” Kariuki said. “These beliefs discourage families from seeking medical care.”
Public education, he said, remains one of the most effective ways to counter such misconceptions.
“When people understand that epilepsy has a biological cause and that treatment can stop seizures, attitudes begin to change,” he said.
Digital tools and health system innovations
The EPInA project has developed several innovations designed to improve diagnosis and patient care within Kenya’s health system.
These include digital dashboards that allow county governments in Nairobi and Kilifi to track epilepsy and mental health indicators in real time.
Researchers have also piloted an SMS reminder system that could help patients adhere to treatment schedules.
Another innovation is the Epilepsy Diagnostic Companion, a mobile application designed to help primary health care workers identify convulsive epilepsy with high accuracy.
The project has also strengthened health worker capacity by integrating the World Health Organization Mental Health Gap Action Programme Intervention Guide (mhGAP-IG) into routine training across Kilifi and selected health facilities in Nairobi.
Regional training initiatives have also been expanded, including the establishment of the Epilepsy Training in Adult Medicine (ETAM) programme.
The project has further supported the development of future epilepsy researchers, funding eight PhD students four of whom have already completed their doctoral studies.
Community voices shaping policy
Beyond clinical research, the project has also focused on community engagement to address stigma.
Researchers collected more than 100 oral histories from people living with epilepsy in Nairobi and Kilifi, helping document patient experiences and inform more patient-centered policies.
“Through digital tools, health worker training and community engagement, the project is providing solutions that can potentially be scaled up to improve early detection and quality of care,” Kariuki said.
Prevention possible
Researchers say a significant proportion of epilepsy cases could be prevented.
Birth complications that deprive the brain of oxygen, severe infections such as cerebral malaria and untreated head injuries are among the leading causes.
Improving antenatal care and encouraging facility-based deliveries could help reduce birth-related brain injuries that may lead to epilepsy.
Experts estimate that up to 30 percent of epilepsy cases could potentially be prevented through such interventions.
Diagnosis and treatment
Contrary to common belief, diagnosing epilepsy does not always require complex tests.
In many cases, clinicians can diagnose the condition based on a patient’s medical history.
“If someone has experienced two unprovoked seizures, that is often sufficient to diagnose epilepsy,” Kariuki said.
When properly treated, seizures can be controlled in about 70 percent of patients using anti-epileptic medicines.
Common drugs available in Kenya’s public health system include phenobarbital, phenytoin, carbamazepine and sodium valproate.
“These medicines are affordable and effective,” Kariuki said. “In some cases, a patient can receive medication for an entire year for around 5,000 Kenyan shillings.”
However, newer drugs such as levetiracetam remain largely available only in private facilities.
Addressing stigma and discrimination
For many patients, the biggest challenge extends beyond the medical condition itself.
People living with epilepsy often face discrimination, social isolation and barriers to education and employment.
“Epilepsy is not an intellectual disability,” Kariuki said. “People with epilepsy can live normal, productive lives if they receive proper treatment and support.”
Strengthening the national response
Kenya is now aligning its national response with the WHO Intersectoral Global Action Plan on epilepsy and neurological disorders.
According to Elijah Songok, Director General of the Kenya Medical Research Institute, the EPInA findings provide a strong evidence base for future policy reforms.
“The EPInA evidence provides an essential foundation for strengthening epilepsy care in Kenya,” Songok said.
“Partnering with the World Health Organization, the Ministry of Health and international collaborators ensures that Kenya is aligned with global efforts to address brain health and improve equitable access to care.”
Experts say sustained collaboration between government, researchers and communities will be critical to closing the treatment gap and improving the lives of millions of Kenyans living with epilepsy.
“Epilepsy is manageable and often preventable,” Kariuki said. “With awareness, early diagnosis and access to treatment, millions of people could live healthier lives.”
