Epilepsy advocate and awareness ambassador Fredrick Beuchi has urged the government to strengthen policies, expand public education and involve more medical professionals in efforts to improve healthcare and protect the rights of people living with the condition, warning that stigma and difficulties accessing disability support continue to affect many Kenyans.
Beuchi said people with epilepsy still face discrimination, widespread misconceptions and challenges obtaining official disability recognition, despite ongoing efforts to improve treatment and promote the rights of persons living with disabilities.
Speaking during an interview on Radio Generation on Friday, November 6, he said the ongoing review of Kenya's national epilepsy guidelines by the National Epilepsy Coordination Committee provides an opportunity to address longstanding gaps in treatment, public awareness and social protection.
He expressed hope that the revised guidelines would be presented to relevant government authorities to help strengthen advocacy and improve the support available to people living with epilepsy.
"Currently, we are working on reviewing the national epilepsy guideline by the National Epilepsy Coordination Committee, of which I happen to be a board member. And we do really hope that by the time the document has been reviewed, we'll be able to share it now with the authorities in place to help us push the agenda further," Beuchi said.
He also welcomed the inclusion of epilepsy under the recently endorsed Disability Act, describing it as an important development that could help affected individuals access disability certification and other forms of government assistance.
According to Beuchi, people living with epilepsy have historically struggled to obtain disability certificates because assessment procedures have often placed greater emphasis on physical impairments that can easily be identified.
He illustrated the challenge using his sister's experience, explaining that although she lives with epilepsy, her disability certificate was issued because of a physical condition rather than the neurological disorder.
"In the recent past, you would only qualify to get a disability certificate if they are able to see what kind of disability it is. Even for my sister who has epilepsy, the disability certificate that she has was given based on the limping, and not epilepsy, because they look at you, you look very normal, and they ask, how do we tell that you have epilepsy?" he said.
Epilepsy is a long-term neurological condition that causes repeated seizures due to unusual electrical activity in the brain. Depending on the individual, seizures can result in involuntary body movements, temporary loss of awareness, changes in sensation and, in some cases, unconsciousness.
The World Health Organization (WHO) estimates that about 50 million people worldwide live with epilepsy, making it one of the most common neurological disorders. The organisation further estimates that up to 70 per cent of those affected could live without seizures if they receive proper diagnosis and treatment.
However, the effects of the condition are not limited to seizures and other physical symptoms. People living with epilepsy can also experience difficulties in education, employment, personal relationships and participation in community activities.
Some patients suffer injuries during seizures, while others experience anxiety, depression and social isolation. Their families and caregivers may also face financial and emotional difficulties arising from the cost of medication, hospital visits and the responsibility of providing long-term care.
In Kenya, negative beliefs about epilepsy continue to complicate efforts to support those affected. Some communities associate seizures with witchcraft, curses or spiritual possession, exposing patients to discrimination and, in some cases, interventions from traditional or religious practitioners instead of seeking medical attention.
A 2024 systematic review examining epilepsy-related stigma in East Africa estimated that 33.2 per cent of people living with epilepsy in Kenya experienced perceived stigma, pointing to the social difficulties that continue to surround the condition.
Against this background, Beuchi argued that efforts to improve epilepsy care should extend beyond providing medication, clinical treatment and regular medical assessments.
He called for neurologists and other healthcare professionals to take a more active role in public awareness campaigns and policy discussions, saying their involvement would help communities better understand epilepsy and challenge harmful beliefs.
He observed that organisations such as the Kenya Society for Epilepsy have invested considerable attention in research, treatment and scientific discussions, but maintained that more effort should also be directed towards addressing the social challenges faced by patients.
Beuchi further explained that controlling seizures does not necessarily protect people with epilepsy from discrimination or the difficulties they experience when dealing with others.
He said his sister's condition is medically controlled, but noted that people living with the disorder may continue to face social barriers even when their symptoms are managed.
The ambassador also raised concerns about the challenges involved in diagnosing epilepsy, explaining that electroencephalogram (EEG) tests do not independently confirm every suspected case.
He called for disability assessments to take into account an individual's wider medical circumstances instead of relying mainly on physical signs that can be seen during an examination.
Beyond government intervention and the involvement of medical professionals, Beuchi said families, caregivers and community organisations should be included in awareness programmes to improve the support available to affected individuals.
He disclosed that his organisation, the Foundation for People with Epilepsy (FPE), has established an epilepsy awareness pathway targeting caregivers, giving families an opportunity to share their experiences and learn how to care for relatives living with the condition.
Through the Epilepsy Awareness Resource Centre, he said people with epilepsy, caregivers and members of the public interested in advocacy can also take part in awareness activities aimed at improving understanding of the disorder.
Beuchi maintained that ending discrimination would require continued cooperation between the government, healthcare professionals, disability organisations, families and communities.
He urged Kenyans to abandon beliefs that associate epilepsy with spiritual forces and instead recognise it as a medical condition requiring proper care and understanding.
He said people living with epilepsy should be treated with dignity, given equal opportunities and supported to participate fully in society without being judged or excluded because of their condition.