Kenya's push to change public perception of neurological disorders

Stigma and discrimination create barriers to healthcare for people with epilepsy conditions. [File, Standard]

For many people living with neurological conditions, the greatest challenge is not always the diagnosis itself.

Often, it is the silence that follows the curious stares, whispered conversations, hurtful labels and misconceptions that turn a medical condition into a social burden.

For families caring for people with epilepsy, Parkinson’s disease and other neurological disorders, the struggle extends far beyond hospitals and treatment rooms. It affects relationships, education, employment and the ability to participate fully in community life.

Kenya is now taking steps to confront that reality.

The Ministry of Health, in partnership with Aga Khan University’s Brain and Mind Institute and Newcastle University, is developing a national roadmap to tackle stigma surrounding neurological conditions. The roadmap is expected to guide efforts to improve awareness, strengthen inclusion and ensure that people living with neurological conditionscan access care and support without fear of judgment or discrimination.

The initiative has brought together policymakers, researchers, healthcare professionals, advocacy organisations, caregivers and people with lived experience. During a two-day meeting in Naivasha, stakeholders are translating research findings and personal experiences into practical policy action.

For the Ministry of Health’s Director of the Division of Mental Health, Dr Mercy Karanja, addressing stigma is essential to improving brain health in Kenya.

“Fear of judgment often prevents people from accessing the care and support they need,” she said.

Dr Karanja reaffirmed the government’s commitment to ensuring quality care for people living with mental, neurological and substance use disorders.

“The Ministry of Health remains unwavering in its commitment to ensuring that every citizen, including those living with mental, neurological, and substance use disorders, receives the quality care they deserve,” she said.

She added that the issue goes beyond health policy.

“This is not just a health policy goal; it is a constitutional right under Article 43(1) (a) of our Constitution.”

The urgency of the initiative is reinforced by the growing burden of neurological conditions in Kenya.

Recent studies indicate that up to nine per cent of Kenyan children experience neurodevelopmental disorders, while epilepsy alone accounts for nearly 40 per cent of neurological disability-adjusted life years in rural populations.

Despite these figures, myths and misinformation continue to shape public attitudes.

Some people with epilepsy are still viewed through the lens of superstition, while others living with neurological disorders experience discrimination, isolation and exclusion from education, employment and community life.

Caregivers often carry an equally heavy burden, facing emotional exhaustion, financial strain and limited support from society.

Stakeholders say this is why the voices of people living with neurological conditions and their caregivers must remain central to the development of the national roadmap.

The process builds on findings from the British Academy-funded Canvas for Change project, led by Aga Khan University’s Brain and Mind Institute in collaboration with Newcastle University.

The project used participatory theatre, documentary storytelling and community dialogue to explore how stigma affects people living with neurological conditions across Kenya. Rather than relying solely on statistics, researchers sought to understand the lived experiences behind the numbers.

The stories revealed how stigma can undermine confidence, strain relationships and discourage people from seeking medical care.

Dr Mary Bitta, Implementation Scientist at Aga Khan University’s Brain and Mind Institute and Principal Investigator of the Canvas for Change project, said the experiences shared by communities exposed the true impact of stigma.

“The stories we heard showed us that stigma can be as limiting as the condition itself. Seeing those experiences shape national policy is exactly what this project set out to achieve,” she said.

The roadmap will identify priority actions, define the responsibilities of different stakeholders and establish a coordinated framework for addressing stigma while promoting inclusion.

It also builds on national consultations conducted by the Ministry of Health since 2024 under the World Health Organisation’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, which encourages countries to establish national awareness and advocacy programmes by 2031.

For Prof Zul Merali, Founding Director of the Aga Khan University Brain and Mind Institute, the process represents an opportunity to ensure research leads to meaningful change.

“Research should not end in academic journals. Its greatest value is realized when it informs policy and improves people's lives,” he said.

The participation of caregivers and people with lived experience has brought an important human perspective to the discussions.

Among them is Parkinson’s disease caregiver and Kisumu County First Lady Dorothy Nyong’o, whose involvement highlights the daily realities faced by families supporting loved ones with neurological conditions

Experts argue that neurological disorders should not be viewed solely through a medical lens.

While diagnosis and treatment remain essential, the social environment in which a person lives can significantly influence their quality of life. Fear of discrimination may prevent someone from seeking treatment. A child with a neurodevelopmental disorder may be excluded from school. A person living with epilepsy may struggle to find employment or participate fully in community life.

In every case, stigma compounds the impact of the condition itself.

The national roadmap therefore aims to unite the health sector with communities, policymakers, researchers, advocacy organisations and families in a coordinated effort to address stigma and promote inclusion.

For Kenya, the initiative signals an important shift, from focusing only on neurological conditions to challenging the attitudes and misconceptions that often make life more difficult for those affected.

The message emerging from the discussions is simple but powerful: a diagnosis should never become a sentence to social exclusion.

As Kenya develops its national roadmap, stakeholders hope to create a future where people living with epilepsy, Parkinson’s disease and other neurological conditions are understood, supported and treated with dignity.

Because while medicine can help manage a condition, changing society’s attitudes may ultimately be what enables people to live full, productive and inclusive lives.