Breaking the Myth associated with Epilepsy

By Njeri Mwangi in Nairobi

Patricia Muvea

Nurse at KNH Petronila Mogusi

Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people.This condition is characterized by recurrent, unprovoked seizures.
Delayed recognition of these seizures and inadequate treatment increase the risk for additional seizures, disability, decreased health-related quality of life and, in some instances, death.

Although epilepsy can occur at any age, the condition is more likely to begin among children less than 2 years of age and adults older than 65 years. As do many who live with other chronic disorders, those with epilepsy often face challenges related to managing epilepsy treatment, symptoms, disability, lifestyle limitations, emotional stress, and most of all stigma from the community.

WE recently attended the inaugural African Epilepsy Congress opened  last week in Nairobi with calls on doctors and society to fight the stigma facing people living with the disease. 

Wrist ribbon

Medical Services minister Anyang’ Nyong’o described epilepsy which afflicts 800,000 people in Kenya as the commonest neurological disorder in the country.

“Participants attending this congress should come up with strategies to address the plight of the epileptic in order to reduce the treatment gaps that currently exist in our region,” Prof Nyong’o said.

It is believed that school going epileptics undergo the most difficult time especially if they get seizures in the school compound. This was confirmed by james Mwangi, a 18 year old boy who had just cleared his secondary education and has come out to share his story. James said he had a hard time since he started having seizures when he was in class 4. "I was confined at one corner of the classroom by the teacher who feared i could 'pass' the disease to the other students," he remembers. 

He said there were times when he was carried out of the class to go recover from a seizure  away from other kids. "This was very difficult for me, i was looked at differently by the teachers and the classmates as well, i lost my friends and had no one to play with." A composed James cited the 4 years he went through primary school with epilepsy as the most difficult period of his young life.

Though he says his parents were overprotective, home was the best place for him to be. "Every time i stepped to the school gate, i started missing home," he opens up.

 Epilepsy impacts everything from dating to driving to making plans for the future. James remembers how he was left by her girlfriend when she knew of his condition. "I was living in denial and had vowed never to tell her of myself, but as fate could have it i once had i seizure when we were together after which she confessed to me that she could not date someone who has 'evil spirit', at that point i wished to die," he remembers.

It was after this that James decided to make everyone around him get to know of his condition. "I hated what i felt but i wanted people to take me as i was. I have since been eloquent and i got another girlfriend who understands the condition," he says smiling. James has been on treatment for 13 years now. He has managed to know what triggers his seizure and he rarely gets them. "I avoid stress and getting too tired and sleeping late, this are the things that can cause a seizure in me,"  he tips. "Youth with epilepsy have to listen more to their bodies than others," advises James who now runs an electronic shop in downtown Nairobi.

For example, the use of alcohol or illegal drugs can worsen seizures in some adolescents.

It is of importance to educate people about epilepsy and make people know what to do if they see someone having a seizure.  Education also helps people with epilepsy know they aren’t alone. Petronilla Mogusi, an epileptic nurse at KNH said epilepsy is a condition like any other adding that it cannot be transmitted by touch or breath. "Some people say epileptics have evil spirits and don't want to associate with them, this is a demeaning statement which is false and eats us up," she laments. She said Epilepsy is a condition and urged the community to do away with the 'evil spirit' which seems to be stuck in the minds of many. 

Petronilla started having seizures 8 years ago when she was still a nurse but was quick to point out that she did not get it from a patient. She said if only epileptic patients are shown love and support they are capable of achieving seizure control and even overgrow the condition with time. She encouraged the young people with epilepsy by asking them to look at her as a role model. "Look at me, i am a nurse in the biggest hospital in the country and i am epileptic, lets get rid of this believe that epileptic people cannot be like others," the all smiling Petronilla advised.   

Patricia  Murea, a form 4 student at St. Ann's Secondary also shared her epileptic experience. Hers was a mixture of joy and sadness. With pain written all over her face she remembers her primary school days. "I used to urinate on myself when having seizures, and nobody could understand," she says. The 17 year old who remembers with tears how she got a seizure when she was cooking and her legs were burnt. "I lost most of my skin, this was a very painful experience and i blamed God for everything, i could not understand why he choose me to go through the suffering."

Her mother Reginah Gichumbi remembers countless times when her daughter was sent away from school because of the condition. "Many teachers believed she had evil spirits and they said they could not keep her in school." She said it was even difficult to get her enrolled to a secondary school since they had to tell the teachers first. "I lost count of the schools i was sent away from," she said. As for Regina, the best way to deal with epilepsy in schools is to have trained nurses assigned to schools to be detecting when a patient is about to have a seizure and administer the drugs.

Petronilla finds the high school life easier since most students understand. " In primary I thought i was the only kid in the world with epilepsy, in secondary i have learnt otherwise, people here are more mature and understands." She says she some day want to be an ambassador speaking out for epileptic persons. "I want to have one day where everyone in the world could show support for people with epilepsy and teach people about it; i want people to look at us as able individuals like others, " concluded the confident young girl. 

Low self-esteem is common among adolescents with epilepsy, so establishing limits and boundaries when it comes to sex can also present a challenge. In an American study, approximately 30% of women with epilepsy who were age 24 years or younger experienced unplanned pregnancy, a higher rate than in the general population.The unique fact of having epilepsy can make it even harder for youngsters to find their place. After all,no teen wants to be thought of as "different".

Epilepsy is still highly stigmatized in Kenya and many communities believe it is due to witch craft or curse and that it is contagious, and that anyone who touches the patient or his excreta will acquire the disease themselves. Others say it is a "punishment from God" or even a form of 'demonic possession'.

While its evident the condition can be overgrown if a patient follows doctor's advice on taking the drugs, there needs to be a lot of training amongst Kenyans. John Kamau, a 68 year old man who got epilepsy 20 years ago is one of those who have come over the condition. "I got the first seizure in my sleep in 1992 and my family was scared to heights," he remembers. He says his family was discriminated against and even a debate came up in church to have them barred from attending services. John has however been loyal to his doctor and its been 7 years since he got a seizure. He still takes the drugs but hopes some day the doctor with declare him healthy and stop administering any epilepsy medication.
 
Families of epileptic patients are often scared to let other people know about the issue. This is because most people would be scared of them and would keep their distance. Because of this, the family tends to shame away from the person affected by it.

Out of the estimated 50 million people suffering from epilepsy globally, 10 million of them live in Africa. However, the management of the disease remains slow in Africa, with the treatment gap estimated at 80 to 85 per cent.

Prof Nyong’o said only about 20 per cent of people suffering from epilepsy in Kenya sought treatment due to the prevailing stigma.

“We should ensure that we allocate enough resources and drugs to enable those suffering from epilepsy access treatment,” the minister said at the forum which was attended by more than 200 delegates drawn from 51 countries at the Crowne Plaza.

He suggested that civil society organizations and youth groups be mobilized to lend a hand in the campaign against epilepsy while regional countries should establish centers of excellence to tackle the disease.

According to KNH records, up to 50 epileptic adults visit the Neurology clinic every Monday while 40-50 children go for clinics every Tuesday.