Zimbabwe News and Internet Radio

People living with epilepsy suffer brunt of social exclusion

By David Chidende

Thirty-three year-old Simon Ncube (not his real name) of Chinyenyetu village in Gokwe was diagnosed of epilepsy at the age of 11, a development he says rendered him a social outcast.

People living with epilepsy suffer brunt of social exclusion
People living with epilepsy suffer brunt of social exclusion (File Picture by New York Times)

“My life took a change for the worse when I was diagnosed with epilepsy,” Ncube said.

“Other students started calling me mamhepo (winds) as they associated the seizures with evil spirits and witchcraft which made me to feel inferior and as a result I isolated myself from other students as a way of avoiding their negative utterances towards me,” he added.

Ncube’s health dilemma typifies the reality of the hurdles faced by people living with epilepsy in Zimbabwe.

Even 34-year old Nobuhle Shumba, who is a mother of two, faces a similar challenge and she could not hide the trauma she suffered at the hands of her in-laws, thanks to her epileptic condition.

“My in-laws thought I would pass it to my children or their son sometimes they would send me back to my parents if I had seizures, which resulted in the failure of my marriage,” Shumba said.

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Zimbabwe has more than 9000 registered epileptic clients and of that population, 60 percent are children.

The World Health Organization (WHO) estimates that of the 10 million people with epilepsy in Africa, 80 percent, or eight million are treated with readily available modern medicine.

However, progress in the management of epilepsy in Zimbabwe has been slow with the treatment gap estimated at 80 percent due to scarcity of anti-epileptic drugs, lack of specialized personnel and incorrect cultural interpretation of the condition.

Epilepsy Support Foundation Acting Director, Rutendo Gwatinyanya said that although the declaration of epilepsy as a health priority in Africa was made in May 2000, very little has been achieved in the interim as people with the condition still face discrimination.

“One of the reasons for this is that there is serious social stigma attached to the condition. Many people believe that epilepsy is contagious, demon possession, bewitchment, or an African disease which needs to be treated by traditional methods only, resulting in people with epilepsy in rural areas not receiving any form of treatment,” Gwatinyanya said.

According to Lovemore Muparadzi, a traditional healer, epilepsy is just like asthma, blood pressure (BP) and diabetes which runs in the family, but in most cases it is caused by witchcraft or sorcery, adding that it can be healed only if the person is not exposed to or burnt by fire.

“It is a dangerous condition especially to women who after experiencing seizures might not know where they will be and what they will be doing. Sometimes it translates to mental disorder,” said Sekuru Muparadzi.

A medical doctor with the Ministry of Health and Child Care, Dr Sydney Mukonoweshuro said the challenges faced by epilepsy sufferers is worsened by stigma that comes from society’s ignorance of the condition.

He added, “The scarcity of drugs and diagnostic equipment like electroencephalography machines (EEG) in public hospitals as well as the stigma attached to the fact that epilepsy is treated at psychiatric hospitals results in many epileptic sufferers delaying seeking treatment because our society is yet to understand that mental illness is just a condition like any other”

Deputy Director in the Ministry of Health and Child Care, Dorcas Sithole also weighed in saying the scarcity of anti-epilepsy drugs is a major challenge.

“We have been unable to support health centres with training in epilepsy management. We hope with more resources in the future we shall be able to do more epilepsy awareness campaigns,” Sithole said.

She (Sithole) implored the Ministry and government at large to strengthen effective leadership and governance and come up with specific policies and legislations to improve the provision of epilepsy care in the country.

She added, “We also need to develop strategies to increase funding for research, medication and educational awareness campaigns as these are key in reducing seizures, stigma and discrimination within our diverse cultures in Zimbabwe.”

According to National Institutes of Health (NIH) in America it is common for people with epilepsy, especially children, to develop behavioural and emotional problems.

Based on NIH, challenges that come with epilepsy in children can be minimized if parents stay attuned to their child’s needs and feelings, accepting to adjust to the child’s seizures without blaming or resenting the affected person.