A procession to mark this year’s World Epilepsy Day at Marindi Hospital in Homa Bay town recently /FAITH MATETE
For many Kenyan families, the first sign of a brain disorder may be a child who suddenly falls and shakes in class or a loved one who begins hearing voices or behaving differently.
However, the illness is often followed by more debilitating stigma in the form of whispers from neighbours, fear from friends and pressure to keep the condition hidden from the public.
Now the government is taking a major step to change that.
The Ministry of Health has started developing a national roadmap to fight stigma and discrimination against people living with mental and neurological conditions, in a move aimed at helping millions of patients seek treatment earlier and live fuller lives.
The Ministry of Health, Aga Khan University's Brain and Mind Institute and Newcastle University launched the process during a meeting that brought together government officials, doctors, researchers, patient groups and families of affected people.
The roadmap will focus on conditions such as epilepsy, Parkinson's disease, dementia and other neurological disorders that often leave patients isolated, feared or excluded by families and communities.
Health experts say stigma remains one of the biggest barriers to treatment in Kenya. Many people delay seeking help because they fear being laughed at, rejected, denied jobs or labelled as cursed or bewitched.
Dr Mercy Karanja, director of the division of mental health,said reducing stigma is critical because fear of judgement often stops people from seeking help.
“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. This is not just a health policy goal; it is a constitutional right under Article 43(1)(a) of our Constitution (2010)."
She added: “The creation of this roadmap encourages multisectoral collaboration, which is our only viable path toward ensuring people living with neurological conditions are understood, supported and able to access the care they need.”
Studies show that up to nine per cent of Kenyan children live with neurodevelopmental disorders, while epilepsy alone causes almost 40 per cent of neurological disability in rural communities.
The new roadmap aims to improve access to care and support by bringing together policymakers, healthcare workers, advocacy groups, caregivers and people living with the conditions themselves.
The initiative is part of Kenya's efforts to implement the World Health Organisation's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, which calls on countries to establish national awareness and advocacy programmes by 2031.
The roadmap 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 understand how stigma affects people living with neurological conditions across Kenya.
Those findings will help identify priority actions, define who is responsible for carrying them out and create a coordinated national response to improve awareness and inclusion.
According to the WHO, one in every four Kenyans seeking healthcare services has a mental health condition. Yet many suffer in silence because of fear, shame and discrimination.
People living with mental illness often face rejection from family members, friends and employers. Some are hidden away at home while others are abandoned or denied opportunities at school and work.
People with epilepsy are among those most affected.
Studies conducted in Kenya have found that many people still believe epilepsy is caused by witchcraft, evil spirits or curses. Others wrongly think the condition is contagious.
The Kenya Association for the Welfare of People with Epilepsy has previously warned that stigma causes many patients to avoid seeking treatment even when effective medicines are available.
Health experts say these beliefs delay diagnosis, increase suffering and make it harder for patients to live normal lives.
Neurological conditions are among the leading causes of disability worldwide, yet stigma remains one of the biggest barriers to early diagnosis, treatment and social inclusion.
Many people continue to delay seeking care because of discrimination, myths and fear of being ostracised, making stigma reduction a major public health priority.
The Naivasha meeting is expected to produce a practical implementation plan complete with activities, timelines and responsibilities. It builds on earlier consultations that the Ministry of Health has been leading since 2024 under the WHO action plan.
Prof Zul Merali, director at Aga Khan University Brain and Mind Institute,said research must lead to real changes in people's lives.
“Research should not end in academic journals. Its greatest value is realised when it informs policy and improves people's lives,” he said.
Dr Mary Bitta, an implementation scientist at the institute and principal investigator of the Canvas for Change project, said the stories collected during the research showed how deeply stigma affects patients and families.
“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.”
