Brian Machuka has spent most of his life battling more than just epilepsy; he has been fighting the deeply ingrained stigma that surrounds the condition.
Diagnosed at the age of seven, Machuka recalls how his frequent seizures led to isolation, mockery, and fear within the community.
In school, fellow students avoided him, believing that epilepsy was contagious. At home, some relatives whispered that she had been bewitched.
“The hardest part was not the seizures but the way people treated me afterward,” Machuka shares.
Machuka recalls that some would run away, others would tell me to seek prayers because they thought I he was possessed, even some teachers told his parents he should not be in school.
He says that that is how he ended up dropping out if the school.
The Burden of Stigma
Machuka story is not unique. In Kisii County, epilepsy is still shrouded in myths and misconceptions. Many believe supernatural forces, a curse, or punishment for wrongdoing causes it.
As a result, people living with epilepsy face discrimination, exclusion, and, in some cases, even violence. Some families choose to hide their loved ones, fearing shame and rejection from the community.
Lucy Kifue living with epilepsy for more than 15 years says that, she was isolated from the community even the family members excluded her from interacting with others.
She says that let the community start to embrace those living with epilepsy and avoid stigma, has the stigma makes them to feel rejected and feel that they are not part of the community.
Dr. David Okinyi, the County Cancers and Non-Communicable Diseases Coordinator for Kisii County and Chair of the Non-Communicable Caucus in Kenya, cites that the importance of raising awareness and encouraging families to bring epilepsy patients out of hiding.
Dr. Okinyi says that that stigma often prevents patients from seeking medical care.
“Many people with epilepsy avoid hospitals and instead turn to traditional healers or faith-based interventions,” he says. “By the time they reach us, they have suffered severe complications that could have been managed with medication.”
“We want to tell our community to stop hiding their loved ones who have epilepsy. There is treatment available, and we can manage the condition effectively so that patients can lead comfortable and productive lives,” Dr. Okinyi states
Despite managing between 1,000 and 2,000 epilepsy cases annually at the Kisii County Referral Hospital, Dr. Okinyi noted that these figures do not reflect the actual burden of the disease. Many patients remain hidden due to stigma and misconceptions.
“We have a large number of patients who are not accounted for because of cultural beliefs and fear of discrimination,” he explained. “We need to change this narrative and encourage families to seek medical help,” he says.
Statistics
According to World Health Organization (WHO) globally, an estimated 5 million people are diagnosed with epilepsy each year. In high-income countries, there are estimated to be 49 per 100 000 people diagnosed with epilepsy each year.
Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally and nearly 80% of people with epilepsy live in low- and middle-income countries.
It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
Patrick Ngechu, CEO of Kenya Association for the Welfare of People with Epilepsy (KAWE), supports the campaign, stating that Kisii County’s high numbers justified its initiation there.
He notes that KAWE, with 43 years of experience addressing epilepsy, serves 17,000 epilepsy patients. The organization aims to help the community overcome fear and stigma, improve treatment accessibility, and reduce the treatment gap.
“In Kenya, we have about one million people living with epilepsy. Statistics show that 17 out of every 1,000 people have epilepsy, a figure significantly higher than in developed nations, where the prevalence is about 9 to 10 per 1,000,” Ngechu says .
He referenced the World Health Organization’s target of having 80 percent of people with epilepsy on treatment, emphasizing that this goal is unachievable without addressing stigma.
KAWE operates four clinics in Nairobi, serving approximately 25,000 epilepsy patients.
The organization also supports 29 affiliate clinics across Kenya, including in Malindi District Hospital, and hopes to establish additional centers in Kisii County.
Causes
The World Health Organization (WHO) is calling for increased global awareness of epilepsy, a neurological disorder affecting over 50 million people worldwide, to combat social exclusion, discrimination, and barriers to accessing healthcare, education, and employment opportunities.
According to WHO epilepsy is a chronic non-communicable disease of the brain that affects people of all ages.
Epilepsy is not contagious. Although many underlying disease mechanisms can lead to epilepsy, the cause of the disease is still unknown in about 50% of cases globally.
Epilepsy accounts for a significant proportion of the world’s disease burden, affecting around 50 million people worldwide. The estimated proportion of the general population with active epilepsy—those experiencing ongoing seizures or requiring treatment—ranges between 4 and 10 per 1,000 people,” the statement read.
The health agency reports that nearly 80 per cent of people with epilepsy live in low- and middle-income countries.
However, 70 per cent of those affected could live seizure-free if properly diagnosed and treated.
WHO further highlights that three-quarters of people with epilepsy in low-income countries do not receive the treatment they need.
Survey in Kisii County
According to the Knowledge and Attitude Perception (KAP) baseline, survey conducted on 345 households in Kisii county 2024 indicates high stigma towards epilepsy patients, the findings shows Nyaribari Masaba constituency has the highest number of people living with epilepsy condition.
In his presentation Dr. Okinyi notes that findings also indicates, Nyaribari Masaba has high preference of people who belief in misconception and social inclusion while Bomachoge Chache has the list number. Bobasi constituency has high prevalence of stigma compared South Mugirango.
“This survey also indicates, women with epilepsy condition face more stigma compared to men, 17.3% of patients seek traditional medication such as witchcraft while 66% have knowledge on Medical care and 33.4% travel to Nairobi for treatment
Impact on Employment
For many people living with epilepsy access to education and employment remains a challenge. According to Kenya Association Welfare of people with Epilepsy (KAWE) for, schools often expel or refuse to enroll children with epilepsy due to concerns about liability and disruption.
Sophia Kemunto, who holds a diploma in business administration, struggled to secure a job due to her epilepsy. “At one interview, they asked if I had any health conditions. When I mentioned epilepsy, they immediately changed their tone and never called me back,” she recalls.
Seeking Solutions
Despite these challenges, advocacy efforts are gaining momentum. Organizations such as the KAWE are working to educate communities, dispel myths, and improve access to medical treatment.
Ngechu says that the group conducts public awareness campaigns, school programs, and support groups to empower people living with epilepsy and their families.
Deputy Non Communicable Disease Kisii county coordinator Yunis Nyarora sasy that as Healthcare professionals in Kisii they are pushing for better policies to integrate epilepsy care into primary healthcare services.
“We need more awareness, especially at the grassroots level. If people understand that epilepsy is a neurological condition that can be managed, and then stigma will reduce,” says Nyarora.
A Call for Change
Kisii County Executive Member of Health Ronald Nyakweba says that breaking the stigma around epilepsy in Kisii requires collective action from families, educators, healthcare providers, and policymakers.
“There is hope that one day; epilepsy will no longer be seen as a curse but simply as a manageable medical condition, allowing those affected to live with dignity and without fear,” he says.
To improve accessibility, Kisii County has established 10 outpatient medical clinics dedicated to non-communicable diseases, including epilepsy. These facilities, located in Kisii Teaching and Referral Hospital, Gucha, Nyamache, Nduru, Kenyanya, Iranda, Marani, Yasusu, Keumbu, and Iyabe sub-county referral hospitals, provide specialized care without requiring patients to travel long distances.
Nyakweba says that such centers reduce the cost burden on patients by bringing services closer to them.
Julianne Nyakeri professional nurse at Kisii Teaching and Referral Hospital is now a vocal advocate for epilepsy awareness, using her story to inspire change.
She visits schools and churches, speaking about the realities of living with epilepsy and the importance of inclusivity.
“If people can see that I can live a normal life despite having epilepsy, maybe they will start to change their perceptions,” she says.
To dispel myths that have contributed to stigma and mistreatment of epilepsy patients. Dr. Okinyi denounced traditional beliefs that epilepsy is caused by witchcraft or supernatural forces, noting that it is a medical condition with identifiable causes such as infections, trauma, tumors, and complications from hypertension.
“Epilepsy is a disease like any other, and it can be managed with proper treatment. We urge the community to seek medical attention and stop isolating affected individuals,” he says
Nyakeri encourages those living with epilepsy to seek medical services and assured them that the condition is treatable and manageable, allowing for a normal life.
Epilepsy Center
Nyakweba assured residents that an epilepsy center would be established in Kisii County to primarily serve individuals living with epilepsy.
According to Nyakweba the center’s launch is particularly significant in a region where cultural beliefs often link epilepsy to curses or witchcraft, leading many patients to suffer in silence without medical intervention.
“By offering neurological consultations, access to medication, counseling, and community education, the center seeks to bridge the healthcare gap and improve the quality of life for people with epilepsy,” he says.
He says that center is set to bring hope to thousands living with the condition, the facility aims to provide specialized care, accurate diagnosis, affordable treatment, and public awareness programs to combat the myths and discrimination surrounding epilepsy.
Similar Posts by Mt Kenya Times:
- Mt Kenya Times ePAPER July 12-13, 2025
- NCA Leads From The Front As Contactors License Renewal Campaign Kicks Off
- K Unity SACCO Strengthens 17-Year Partnership with Craft Silicon to Deepen Digitization and Financial Trust
- Mt Kenya Times ePAPER July 11, 2025
- Government Should Enforce Laws To Fight Plastic Pollution
