Feature -Breaking the deep rooted stereotypes and stigma on epilepsy

By Hebert Mutugwi

Harare (New Ziana) -Promising young Zengeza-based musician Joseph Maburutse who was in his early 20s, had just started a family with a fellow singer only for his epileptic condition to intervene and end his dream.

Blessed with a baby girl in 2004, the young couple had moved in together when Maburutse began experiencing regular seizures, at times fitting three times in a day.

This compelled his in-laws to force their daughter to abandon him and the young mother eventually relented after her family threatened to disown her.

Maburutse was left to face a condition that many know little about and associate with evil spirits and witchcraft without the love of his life, when her presence and support could have played a huge part in enabling him to deal with the condition.

“Her family was unhappy with my condition and demanded that we part,” he said during an interview.

“I had become seriously ill and could suffer as many as three seizures in a day and the doctors had advised me against working. We were both singers, they were prepared to disown her so she remarried and has another family.”

He eventually saw doctors who stabilised and referred him to the ESF where he gets free medical assistance and information as he transformed into an epilepsy champion, counselling and referring others with similar conditions in local communities of Chitungwiza.

Maburutse was among people who recently gathered at the offices of the Epilepsy Support Foundation (ESF) in Hatfield in the capital to mark International Epilepsy Day, whose theme was “Love someone with Epilepsy, Ida Munhu ane Epilepsy, Make epilepsy a health priority.”

The event came two years after Zimbabwe recognised epilepsy as a disability through its National Disability Policy launched on June 9, 2021. The policy acknowledges epilepsy as an invisible disability, ensuring people with the disease are included among persons with disabilities supported by the government through the Ministry of Public Service, Labour and Social Welfare with the aim of enhancing their health and wellbeing and that of their families.

Epilepsy is triggered by abnormal electrical discharge in the brain resulting in an involuntary change in body movement, function, sensation, awareness and behaviour, making it one of the worldwide major brain disorders that needs to be considered among priorities in health care and social welfare systems.

Many on the day gave testimonies of how deep-rooted stereotypes and stigma wrecked their lives due to lack of adequate information and education on the condition, estimated to affect about 10 million people on the African continent.

Speaking at the event, Disability Board chairperson Loveness Sibanda said even people with other forms of disability despised those with epilepsy as they consider it to be contagious, a situation compounded by some traditional leaders, healers and self-proclaimed prophets.

Sibanda exhorted the ESF to target these groups in spreading information on epilepsy in the hope of eventually breaking the stereotype, stigma and beliefs about the condition.

She also encouraged people with epilepsy, their relatives and guardians to seek professional medical treatment as many were able to lead normal lives with proper medication.

Kundai Marume, a champion in the fight against the stigma directed at people with epilepsy, said her condition first manifested itself soon after she got married.

Admitting to a short temper which she says is common among people with epilepsy, Marume said her father was fined a beast by a local chief after she attacked a “Tsikamutanda” (self-proclaimed witch hunter) to whom she had been taken for diagnosis.

“We visited many prophets and healers and the story was always the same,” she said. “Even Magaya (Prophetic Healing and Deliverance Ministries (PHD) founder Walter Magaya) I attacked him on March 27, 2016 for his prophesy. There is no corner of the country that I did not visit and a lot of money was lost until I came to ESF where I was saved. It is not witchcraft, it is a form of illness. In fact, it is a disability.”

ESF acting board chairperson Dr Billy Rigava said epilepsy can be managed with proper adequate medication, allowing people to actively participate in socio-economic activities and contribute the economic transformation of the country.

“Shortage of drugs results in patients suffering more seizures often,” he said.

“It is a condition which is despised, which is unfortunate. We want people to bring all those with epilepsy to the attention of the foundation. Some children are barred from attending school for fear that their condition might be contagious. There is suitable medication which can help such people to live normal lives. Epilepsy is just a simple disease which all can live with comfortably.”

ESF director, Dr Taurai Kadzviti who has epilepsy but confesses to living without suffering seizures because of proper medication, said one of the biggest challenges in Zimbabwe and the continent that hinders treatment or accessing health care is the misconception that epilepsy is caused by evil spirits and requires the intervention of faith and traditional healers.

He said the other challenge was the accessibility and availability of epilepsy medication in most clinics, particularly in rural areas, where a lot of people with the disease live.

Other challenges include shortage of qualified health professionals and limited training for nurses, lack of medical equipment and little advances in healthcare.

“Therefore, the ESF is engaging with the government to ensure epilepsy medications are locally manufactured and are subsidized,” he said.

The World Health Organisation (WHO) estimates that 50 million people have confirmed epilepsy and 70 percent are in middle to low income countries while a survey that the MHCC conducted estimated that two percent (nearly 400 000) of Zimbabweans have epilepsy.

However, Dr Kadzviti feels that figure is grossly under estimated as some types of epilepsy are non-visible as opposed to the generalised epilepsy where a person falls and jerks the whole body with froth and sometimes blood coming from the mouth.

He estimates Zimbabweans suffering from epilepsy at about 10 percent of the population.

New Ziana