Epilepsy patients suffer in silence

GROWING up in rural Chimanimani, other kids would shun epileptic patient Definite Maramba.

At times, Ms Maramba, who is now 32 years old mother of three, would have epileptic seizures while playing with her friends.

Those who befriended her would do so for a short while before they were discouraged by their parents from doing so.

It was generally believed that epilepsy (pfari or tsviyo) was contagious and that associating with Ms Maramba would put other children at risk of contracting the disease.

“Ane zvipusha, musatambe naye munozadzwa (She is epileptic, you should stay away from her, otherwise you will contract the disease),” parents would tell their children.

Zvipusha simply means a condition that is infectious. There are, however, other non-derogatory names for the disease, like pfari (jerking), kugwinha (fit) and tsviyo (minor sound), but zvipusha remains the commonly used name in most communities.

According to Ms Maramba, using the correct terms really matter.

Her life was significantly affected by the name of her condition.

“Calling my condition zvipusha is wrong. Because of that, most people do not want you to be close to them as they fear I might infect them with epilepsy,” said the woman.

Contrary to popular beliefs, epilepsy is not contagious. Another epileptic patient, Ms Caroline Ngwasuma said societal attitudes shape the quality of life of people with epilepsy.

“Some names like zvipusha add to stigma against people with epilepsy. This is very common in Zimbabwe. There is need for people to change their attitudes towards epileptic people.

“Because of such name calling, securing adequate income is a problem when you are epileptic in a community that is discriminatory towards your condition,” she said.

The Epilepsy Support Foundation (ESF) estimates that Zimbabwe has an epilepsy prevalence rate of one percent.

In an interview with Tha Manica Post, ESF’s Manicaland chairperson, Mr Ngonidzashe Mutamangira said Zimbabwean epileptic patients face numerous challenges, including poor understanding of the disease and limited access to treatment, as well as predisposition to burns and injuries.

Mr Mutamangira said there is need for promotion of epilepsy awareness within Zimbabwe, adding that many patients are still being discriminated against, with some even being denied their right to education by their own families.

“A good number of patients are being kept at home and denied access to education and health services. This is mainly because their families fear that they might be discriminated against when they go to school or in hospitals,” he said.

Mr Mutamangira said epileptic patients are also discriminated against within the disability movement as their disabilities are not physical.

He said this is because there is no unity in coordination between those with physical disabilities and those with invisible disabilities.

“That discrimination from fellow people with disabilities, coupled with labelling of the disease at community level, result in people with epilepsy experiencing low self-esteem. This prejudices them and affects their socialisation and career development, resulting in an impaired quality of life and socio-economic status,” he said.

Mr Mutamangira said since 1990, the ESF has been promoting epilepsy awareness, treatment and providing back-up support to people with epilepsy.

He also appealed to Government to equip healthcare workers with knowledge on how to deal with epileptic patients as this will help in combating discrimination against them.

“It will also encourage families to take their epileptic children to acquire health services without fear that they might be discriminated. Some of our members are facing challenges of encountering nurses who rarely know how to deal with the condition and they end up shunning visiting the hospitals,” he said.

Mr Mutamangira also said there is need to decentralise epileptic health services to the grassroots for easy access.

“People from across the country have to travel to Harare to consult epilepsy specialists. Due to the high transport costs involved, patients end up foregoing seeking health services,” he said.

Ms Maramba also spoke about many health workers’ lack of knowledge on how to handle epilepsy.

“I have had torrid times when I am taken to local hospitals and clinics while under seizure because most of the young nurses seem to lack knowledge on how epilepsy patients should be treated. It is like they have never heard of the disease at all,” she said.

A recent study conducted by Mr Jacob Mugumbate, a local scholar, titled “Epilepsy: A Manual for Health Workers”, confirmed that the majority of people with epilepsy face various challenges.

“Their major challenges are psycho-social, followed by economic. By comparison, health related issues were the least of the challenges. For psycho-social issues, the findings in the study confirms that stigmatisation and society’s attitude are the most common problems faced by the people with epilepsy in Zimbabwe. This is similar to many other parts of the world, probably due to negative cultural and religious beliefs.

“Misconceptions that epilepsy is contagious may also contribute to the stigmatization. The economic aspect of life was identified to be the second most important challenge overall,” reads part of the report.

The study was conducted through the ESP, the Ministry of Health and Child Care and the World Health Organisation (WHO).

The International Bureau for Epilepsy believes that epilepsy affects 50 million people worldwide, a view supported by WHO.

The Global Campaign Against Epilepsy states that prevalence rates vary from region to region.WHO further estimates that the prevalence rate in Africa is 1,12 percent of the population.