Demystifying epilepsy

Loverage Nhamoyebonde Features Correspondent
It is business as usual along Inez Terrace Street near the Main Post Office entrance in Harare’s Central Business District.
The street, which is always crowded, acts as a rendezvous for many visitors and is a notorious market place for cellphone dealers who sometimes play cat and mouse games with the police.

The Friday heat is sweltering, vendors are selling mineral water, a dollar for two bottles – it is a hive of activity.

A man walks towards the busy street heading to Ximex Mall. As he manoeuvres and negotiates with traffic, he collapses before crossing the street.

Screeching sounds of tyres protesting against the tarmac surface are heard as drivers frantically try to avoid running over the man.

Pedestrians scramble to the scene to get a glimpse of the man who shakes violently, kicks wildly and groans. They watch helplessly with faces torn between fear and lack of knowledge of what is happening.

Some even take out their cellphones to capture the moment and show others. As blood starts oozing from his mouth a passerby approaches the man and starts to administer first aid.

The Good Samaritan places his jacket under the man’s head to prevent it from bouncing against the tarmac surface.

He places a rubber material between the man’s teeth to stop him from chewing his tongue. The crowd continues watching in disbelief until the Good Samaritan breaks the silence and explains what was going on.

“Do not be afraid, the man will be okay. He is not dying but he is experiencing seizures as he suffers from epilepsy,” the Good Samaritan explains.

When the man finally regains consciousness, the crowd disperses each one of them to his or her business.

Unfortunately, they disperse without knowledge on epilepsy as a condition, some suggesting he has been possessed by evil spirits. A man even calls a colleague and tells her to ask one of the prominent prophets in Harare to come to the rescue of this man.

A man suggests he seeks help from the Zimbabwe National Healers Association, for the condition the victim has once haunted his sister and they got help from a very powerful traditional healer in Mufakose.

Then others just claim that he was intoxicated by illegal substances and would get over it once he sleeps it off.

All these were just the discussions that took place after the man left, exposing the levels of ignorance people have when it comes to epilepsy issues.

Many Zimbabweans lack adequate knowledge on epilepsy as a condition and the situation is derailing all efforts to manage the condition.
Elizabeth Matare (30), who is epileptic, explained the hardships she experiences as a result of living in a community which lacks knowledge of the condition.

“I started suffering from epilepsy when I was five years old and life was not easy especially at school because stigma was the major challenge that I fought daily. Other pupils would shun me. They did not want to be associated with me due to fear instilled in them by unfounded myths surrounding epilepsy.

“I used to sit at the back in classroom and when I collapsed it was very difficult to get help from other children as they always ran away thinking that I was possessed by evil spirits,” said Matare.

She said the situation was even worse at home as other relatives shared the belief that epilepsy is associated with demons.

“The situation prompted me to look for help at Epilepsy Support Foundation and after the nurse in charge of the foundation explained to me I started understanding my condition and I took the opportunity to impart the knowledge to my relatives.

“I am glad that they now understand my condition,” she added.

Charity begins at home, so they say, the knowledge acquired by families with members suffering from the condition must overcome barriers of stigma and discrimination and cascade to all spheres of society.

Taurai Kadzviti (38), who is epileptic, explained the challenges faced by young people living with the condition.

“When a child is suffering from epilepsy, family members shift attention from helping the child and focus on witch-hunting.

“This will worsen the condition of the child as he or she will be neglected as people who are expected to help will be occupied with myths and lies as far as the condition is concerned,” explained Kadzviti.

Kadzviti decried lack of knowledge on epilepsy amongst teachers who are expected to impart knowledge in communities.

“Teachers lack knowledge about epilepsy hence their failure to educate people in communities where they work.

“The situation is made worse when a teacher who lacks adequate knowledge on epilepsy has a child suffering from epilepsy in his or her class.

While the problem affects people in both rural and urban areas, the effects are more pronounced in rural areas.

Mrs Witty Musiyiwa from Nyamadzawo village in Hurungwe is mother to Arnold Musiyiwa (18), who suffers from epilepsy. She decried lack of access to information on epilepsy.

“As a result of lack of information on epilepsy I delayed seeking proper medical help for my son.

“I was convinced that my son was being attacked by demons and witches and I spent many years seeking help from prophets and traditional healers,” said Mrs Musiyiwa.

She said her son’s condition was made worse as he failed to access proper treatment owing to lack of knowledge.

Musiyiwa’s predicament is just a drop in the ocean as there are many mothers whose children suffer from epilepsy and lack knowledge on how to take care of them. There are many myths surrounding the condition with many people associating the condition with witchcraft.

Some have normalised the use of the condition to express their anger when offended.

“Usaita seunepfari” (loosely translated, “Do not behave as if you are suffering from epilepsy”).

The status quo points to the fact that many people in the country will continue holding on to the wrong views on epilepsy as a condition.

Epilepsy Support Foundation director Victor Mugwagwa singled out the media as an effective vehicle in informing and educating the nation on epilepsy.

“Many people are suffering from epilepsy and they are in a denial state because no one wants to be associated with the condition. Several people owing to lack of adequate knowledge associate epilepsy with avenging spirits, witchcraft and demons.

“The media must take responsibility and educate people on the causes of epilepsy which are brain damage related and encourage them to seek medical help,” said Mr Mugwagwa.

According to Epilepsy Support foundation, an estimated 500 000 people in Zimbabwe are suffering from epilepsy.

“There are more than 40 types of epilepsy and in Zimbabwe there are only three known types. Half a million people are suffering from epilepsy and they are not aware of their condition due to lack of knowledge,” said Mr Mugwagwa.

Mr Mugwagwa said 80 percent of people suffering from epilepsy come from rural areas. He said 20 percent living in urban areas have controlled epilepsy as they have better access to medication and information.

According to a research conducted by the Epilepsy Support Foundation, 80 to 85 percent of the affected people are children under the age of 18 and common symptoms range from retarded growth, deficit behaviour, nose bleeding to loss of memory.

The report shows that epilepsy affects both men and women but the latter are more vulnerable as they are always exposed to stress and depression which are the main causes of brain damage that may result in epilepsy.