Confronting stigma and discrimination of people living with epilepsy

Loice Akinyi a mother of two flashes a broad smile as she hands cups of porridge to two women at her house in Manyatta slums. She engages them in an informal talk and they soon burst out into laughter.

Her mood, however, quickly changes moments after we sit down for an interview. For almost three decades, she has endured stigma and pockets of discriminations from her community since she was diagnosed with epilepsy while in primary school.

She takes a few minutes to encourage the two women who had paid her a visit and that is when we learn that they are also struggling with epilepsy.

At 38 years old, Akinyi is still struggling to shake off the stigma associated with epilepsy and has dedicated her life to change the perception of the public about the disease.

Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures.

Seizure episodes are a result of excessive electrical discharges in a group of brain cells. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day.

One seizure does not signify epilepsy, but having two or more unprovoked seizures does.

The cause of seizures is often unknown. Many factors can trigger, increase your risk or contribute to seizures in some people, including brain damage from prenatal or perinatal causes, such as loss of oxygen or trauma during birth, low birth weight, congenital abnormalities or genetic conditions with associated brain malformations, a severe head injury, a stroke that restricts the amount of oxygen to the brain, an infection of the brain, such as meningitis, encephalitis or neurocysticercosis, certain genetic syndromes, a brain tumour, Fever, menstrual periods, lack of sleepand narcotics

There are four main types of epilepsy; focal, generalised, combination focal and generalized, and unknown.

Epilepsy affects several people with statistics in Kisumu indicating that about 200 people are struggling with the condition, according to county’s health department. Akinyi is among those struggling with the disease. “This has been my life for more than 30 years. I believe I am the shining light for other people struggling with epilepsy because disability is not inability,” she explains.

But despite several attempts to change negative perceptions of the public about the condition, some people living with epilepsy claim they are still subjected to discrimination and stigma.

This is evident when Akinyi begins to narrate her journey against the condition, which she claims affected her life growing up. She would experience frequent memory loss and seizures and, in the process, lost her closest childhood friends, while her peers mocked her.

“The memory loss episodes, especially affected my studies and stopped me from undertaking a number of activities, including extracurricular activities,” she recounts.

Seeking traditional healer’s help

Her parents were confused about what was wrong with her and assumed that she had serious mental problems, and her relatives and neighbours believed she had been bewitched.

“My parents even took me to a traditional healer with the hopes of finding help to no avail,” she said.

When she went to high school, Akinyi was eventually found help after a doctor they visited diagnosed her with epilepsy, and she was put on treatment.

While Akinyi was lucky to find help, others never get lucky. Most times, they are kept away from the public by their families and are considered mad, instead of seeking medical advice.

Another epilepsy patient Martha Atieno (not her real name) told Your Health that she has been rejected thrice by her suitors who wanted to marry her, but dumped her right after learning she was epileptic.

The 43-year-old narrated how she had to battle with depression after being diagnosed. She even contemplated suicide before someone came to her aid. “In 2008, I got married to my first husband, but the marriage only lasted two months after I got an attack episode and he kicked me out of our marital home. However, I also blame myself, because I did not inform him while we were dating that I was sick,” she narrates.

Atieno got married again in 2015, but things did not work because of her husband’s constant humiliation saying that his clan did not want their generation to inherit the disease. She went back to her parents’ home. 

Things did not change in her third marriage and she vowed not to get married again.

Just like Akinyi, Atieno did not just suffer discrimination and rejection, she says treatment of the condition is also expensive, and most patients are barely surviving.

Some of the patients who use phenytoin tablet spend about Sh400 per month to purchase four tablets while frequent visits to neurologists can cost up to Sh3,000 or more.

It is Akinyi’s traumatising experience growing up that put her on a journey to not only change her perception of life, but also help others like her navigate the condition. Whereas some would have given up and sunk into depression, she saw an opportunity to transform the lives of people with the condition.

She is now one of the top advocates against discrimination meted on people living with epilepsy in Kisumu.

She worries that mental illness has not been given priority in the country. 

Wide treatment gap

For the past one year, she has been combing through the streets of Kisumu to identify people struggling with epilepsy who have been abandoned by their kin, and has found 15 women, who she counsels.

However, she decried the few treatment facilities in all hospitals, saying the national and county governments should construct the units to help improve access to healthcare for those struggling with the condition.

Some of the patients are also subjected to stigma by health workers.

According to the National Epilepsy Coordination Committee (NECC), the proportion of people with active Epilepsy who are not receiving appropriate treatment is between 60 per cent and 80 per cent. “This wide treatment gap is fuelled by superstitions, cultural beliefs, social stigma, and misconceptions surrounding the condition and compounded by a widespread lack of diagnostic equipment and well-trained personnel to provide quality care,” says NECC.

And that is part of the reasons Loice is spending sleepless nights as she continues with advocacy and push to ensure that those suffering from epilepsy have access to health services.

Through her efforts, she recently she was honoured by the County Government of Kisumu and bagged an award by the Defenders Coalition- a human rights group working with human rights organisations in the country.

She was the only person living with a disability that made it to the top, securing the  second runner’s up among the many participants.

Akinyi has also been going about this whole heartedly moving from house to house advising parents whose children have suffered defilement while their matters pend in the law courts.

According to Loice’s father Felix Omondi, symptoms of her daughter’s condition began showing in 1995 when she was about to sit her Kenya Certificate of Primary Education (KCPE), after she convulsed just before sitting for the exam.

Her younger brother also succumbed to epilepsy.

Dr Osir Otteng, a medical researcher and a health communications lecturer at Maseno University says people suffering from epilepsy face danger when they get attacks and should receive immediate attention.

Risk of injury and anxiety

He claims epilepsy treatment has not been prioritised by the government, adding that, the neglect became worse with the Covid-19 outbreak. “Initially, the focus was on HIV/Aids, but it immediately shifted in 2020 when Corona virus struck,” he says. 

He agrees that there are people in the medical profession who also stigmatise such patients even though they are supposed to be educators.

Dr Odhiambo Omollo a neurologist at the Kisumu Specialist Hospital says the condition affects those living with epilepsy and disrupt their lives if left unattended. 

He says epileptic attacks increase the risk of injuries and anxiety among patients. “Our societal perception of this condition most of the time makes patients feel out of place and not fully accepted in the society in some places. This has a psychological implication on them,” he said.

He says patients who have been diagnosed to have epilepsy are always put on medication known as anti-epileptic drugs.

The drugs are picked carefully based on each patient’s demographics as different patients will respond differently to varied medications. 

According to the World Health Organisation (WHO), as at 2014, the prevalence rate of the epilepsy in Kenya stood at 18.6 per 100,000 of the population.

The Ministry of Health estimates that up to one million Kenyans are living with epilepsy.