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Living with epilepsy: Epileptics tell of struggle with disorder


Epilepsy robs patients of normal life

Lack of information on the disorder has created stigma around it

She sat for four hours sobbing and begging her husband-to-be not to leave her. It was not her fault. She was sick.

MAXMILLA OUMA
Maxmilla Ouma and the love for her life had dated for 15 years, but she kept a secret she feared if discovered, would cost her the relationship. She was epileptic.
What she feared most happened when her fiancé left her. “All our memories and our hopes for marriage were snuffed out in one moment,” says Maxmilla.
That was in 2000 and the rejection is still fresh in her mind.
A week to the dowry payment ceremony, Ms Ouma’s parents told her to be honest with her fiancé about her condition. She was hesitant, but her mother insisted.
She remembers her fiancé saying, “It’s over… I won’t marry a mad woman.”
“This statement took a toll on me. The man I had loved and trusted for 15 years called me a mad woman,” she tells HealthyNation.
After that, the attacks were frequent. She slid into depression and developed complications due to the stress and anxiety triggered by the rejection.
Eight years of healing gave her a second chance at love, or so she thought. The neighbours told the man she was dating that she was bewitched. The relationship ended. The shock caused her depression and for two months, she had seizures daily.
Maxmilla doesn’t like to remember her third relationship. She says it causes her pain and the embarrassment she suffered is too much to bear.
They had gone for dinner when she had an attack (seizure). When she came to, she was wounded and disoriented. Everyone, including her date, were looking at her from the restaurant’s window.
“It’s like the seizures wait for a big crowd to put on a show. The man left me at the restaurant and I was taken home by well-wishers. This was the last time I heard from him,” says the 40-year-old.
She has since ruled out getting married and having children because of her condition.
At school, she was always referred to as “the possessed girl”. No one wanted to be close to her for fear of getting “possessed” as well. She was constantly bullied and made fun of.
Maxmilla was only eight years old when she got her first seizure in 1986. She was in a boarding school and because of the frequent attacks, she was transferred to a day school. She lost friends faster than she could make them.
Whenever Maxmilla fell during the seizures, she hurt herself, bit her tongue and injured her mouth. Maxmilla’s permanent marks from injuries, including a chipped tooth, tell of her struggle with epilepsy. She once fell and pricked her right eye and now she cannot see properly.
“Each seizure was terrifying. Coming to and struggling to remember where you are, why these people are staring at you, and who they are is frightening,” she says. “Losing control of your bladder. Being rolled out of a building on a stretcher is embarrassing,” narrates Maxmilla who now lives with her brother in Matungu village, Kakamega County.
She adds: “The grand mal seizures are exhausting. It takes me even a week to recover from a seizure. My parents would tie me up and lock me up in a room as they watched me because I get violent when I have an attack.”


SAIDI ANDAE
For Saidi Andae, 62, her granddaughter’s rape is a constant remind of the nightmare of epilepsy.
Saidi was fetching firewood when her 16-year-old granddaughter was raped. A man passing by her house saw her granddaughter suffer an attack, pounced on her and dragged her to a nearby bush, where he raped her.
Although Saidi caught the perpetrator, the matter was settled out of court. The man paid Sh20,000 to the family. “I have suffered because of this girl. No one wants to be associated with me in the neighbourhood. They see her as an outcast. When she has seizures, she is very violent and this scares me even more. She falls and rolls on the floor,” says Saidi.
So violent are her seizures, that she broke her bed when she suffered an attack one night.


MARGARET WASUNNA
Margret Wasunna, not her real name, is forced to lock up her child in a room because she does not want people to see her. She also wants to avoid the stigma that comes with giving birth to an epileptic. The girl spends her day in her tiny, dingy room.
Margaret lies to her daughter that she has to stay in the room to avoid being kidnapped.
“She has had several seizures, but she cannot hurt herself since the room has nothing else but the mattress. Unless she hits her head on the floor,” says Margaret. “I should not be talking to you about my daughter. Should my husband find out, I will be killed. He does not want anyone to know she is sick.”
She noticed her daughter had epilepsy when she was six years old. In school, teachers would say her child was always disturbed. Her temperature was always high and she would suffer attacks.
It was at Kenyatta National Hospital that doctors diagnosed her with epilepsy.
“Whenever she got excited, she would suffer an attack. I warned teachers against exciting her,” she says.

DAVID ONYANGO
Epilepsy cost David Onyango his job at EPZ. He is now forced to ask his sisters for help.
He got his first attack in Form Two when he was living with his grandmother, who has since passed away.
The 22-year-old now lives alone at their home in Rongo, Migori County. He says he gets seizures at night. “I’m always afraid something bad will happen. I cook and fetch water, but nothing bad has ever happened so far. I thank God,” he says.
David says people, including his family, fear being near him. They would rather help him from afar and not live with him. “They fear that one day an attack might result in death and the blame will be on them,” says David.

SEXUAL ABUSE
The incidents highlight the plight of Kenya’s epileptics. They suffer stigma and the myths surrounding the disorder make an already fragile situation hard. Most of them are unable to access the lifelong drugs they need for lack of money.
The lack of a proper policy, poor drug compliance and treatment gaps due to low resources have negatively affected the fight against epilepsy.
Maxmilla at some point had to go without drugs because they were not available in public hospitals. “You know we depend on the drugs. If I miss my drugs, the number of seizures and the sequence increase,” Maxmilla tells HealthyNation.
Dr Eddie Chengo, an epileptologist in Malindi and assistant chairperson, National Epilepsy Coordination Committee (Necc), says 20 out of every 1,000 people in Kenya suffer from epilepsy, 80 per cent of whom live in rural areas. Women are more prone to injuries and sexual abuse than men.
“Seizure is a medical condition that requires treatment, but people confuse it with witchcraft. Everyone gets the impression it is demonic. This is one of the misconceptions we need to fight,” says Dr Chengo.
According to Mr Steve Kimwaki, chairman of Kenya Association for the Welfare of People with Epilepsy, one million people have epilepsy. Only 40 per cent of these patients access appropriate medical care. The number of new cases of epilepsy reported in Kenya is approximately 30,000 annually.
“We have a huge treatment gap. The only way to address this is for people to come out to facilities to seek treatment and mostly to alleviate the stigma associated with epilepsy. Health workers should be well trained on matters epilepsy management,” he says.

DRUG PROBLEM
Dr Chengo acknowledges that lack of adequate and accessible healthcare and stigma are hampering the management of the condition.
She says 80 per cent of those with epilepsy do not seek treatment. “The challenges can easily be overcome through proper training of health workers, awareness and treatment,” she adds.
Lack of data on people suffering from epilepsy had been a barrier to implementation of policies. "The only available epilepsy survey was done in Nakuru in 1972. There is need for county governments to conduct surveys and enhance awareness on epilepsy. This will help the government in planning,” says Dr Chengo.
Necc was established in 2010 in collaboration with Bank of Africa and other partners. The committee has held several awareness campaigns on epilepsy, but access to drugs remains a problem.
Dr Chengo says the committee’s activities are usually sponsored by stakeholders with their main sponsor being Bank of Africa.
As explained by Dr Herman Ekea, a consultant physician, Groote Schiur Hospital at the University of Cape Town, epilepsy is a chronic brain disorder characterised by repeated unprovoked seizures occurring more than twice a year. He adds at least two unprovoked seizures are required for an epilepsy diagnosis.

LEAD TO DISABILITY
Explaining further, Dr Joel Kiryabwire, a neurosurgeon at Mulago Hospital in Uganda, says a seizure occurs when there is a problem in the brain. When the brain fails to coordinate with other parts of the body.
He says the length and nature of the seizure has a great impact on the brain. “If the seizure lasts for a long time and occurs repeatedly, it can cause huge harm to the brain. The ones that last for only a few seconds do not affect much. Ideally, the best way to protect the brain is to seek treatment early,” says Dr Kiryabwire.
“When one falls, they always hurt themselves. This is very dangerous and can lead to disability. Parents who are keeping their children locked up are risking the young ones’ lives. The children will develop mental problems,” he adds.
Dr Kiryabwire says even though epilepsy is universal, it is unique for every individual. The triggers are different for every person. “For some, seizures are triggered by extreme emotions such as excitement or stress. For others, it is lighting, noise, wavelength of sound or even something in your diet,” he says.
Epileptics are advised against some sports and very violent movies. “It is generally safe for those with epilepsy to engage in sports. However, contact sports, racing, water sports, swimming and those involving elevated heights are best avoided until epilepsy is well controlled,” advises Dr Kiryabwire.
He says although it is hard to say what really causes epilepsy, experts have pointed at genetic influence, environmental conditions, brain injury during pregnancy and delivery, poor nutrition or oxygen deficiencies, developmental disorders including hydrocephalus and head injury.
The condition, he adds, can be prevented through living a healthy lifestyle by limiting alcohol intake, avoiding smoking, a healthy diet and regular exercise as well as observing road safety and other measures to protect oneself from brain injury.
“It is also important to seek medical advice early for illnesses. Pregnant women should seek antenatal and delivery services in health facilities because certain problems in pregnancy and childbirth can result in epilepsy,” he says.

OUTGROW CONDITION
Dr Geoffrey Liru, a paediatrician at Homa Bay Teaching and Referral Hospital, says epilepsy is as common in children as it is in ageing people. He adds that two per cent of deliveries result in minor injuries to the brain and some of these may lead to epilepsy.
The facility attends to three to five cases per week on their clinic days. Unfortunately, some parents, have trouble determining what the problem is, while others confuse related childhood conditions such as febrile convulsions with epilepsy.
“There are quite a number of children who suffer the condition at our facility and that’s why we have always advocated hospital deliveries. Any child who suffers from malaria or meningitis may end up with epilepsy,” says Dr Liru, who is in charge of a special clinic for children with epilepsy in the county.
Epilepsy in children is managed through medication. However, numerous forms of seizures are usually outgrown.
At Homa Bay Teaching and Referral Hospital, because of the high number of epileptics, especially children, they have trained nurses and clinical officers to take care of the population working under the guidance of specialists.
“As a package for Universal Health Coverage, these people have to be attended to, they have to be diagnosed and given the medication. We need to get a healthcare model that will take care of the cost of medication for the population,” says Dr Liru.