Epilepsy: breaking the stigma

Between one and two percent of Zimbabweans suffer from epilepsy, a condition that is treated with suspicion and contempt by many locals, resulting in patients dealing with the rejection of their communities.

Female epileptics are often injured when they suffer fits while preparing food over an open fire.
Female epileptics are often injured when they suffer fits while preparing food over an open fire.

Nobuhle Shumba has suffered from epilepsy since the age of 14. Now, a 29-year-old mother of two, the condition means that she has seizures that can last as long as three days.

During one bout of seizures that left Shumba hospitalised, her marriage broke down and she was left to fend for herself and care for her children alone.

“My husband knew my condition, but I was deeply hurt when he could not be there for me when I needed him the most,” she said.

Zvanaka Gomo, the National Co-odinator of Epi-Women, a women’s wing of the Epilepsy Support Foundation of Zimbabwe, said most women living with epilepsy had lost their self-esteem as the condition had removed all their respect and dignity.

“Most women living with epilepsy do not regard themselves as marriage material as society rebukes men courageous enough to marry someone with the condition,” said Gomo.

Prone to abuse

A study undertaken in India revealed that women with epilepsy were affected in almost every area of their life: marriage, motherhood, education and employment. These women are prone to abuse and most of the cases are rarely reported.

Sekuru Svosve (Tichaona Mushangazhike), a traditional healer in Hatcliffe, believes epilepsy is the devil at work and said that the victim has to suffer, enriching the perpetrator in the process.

“Marriage is a no go area for these women as they suffer isolation and segregation so much that even those close to them cannot associate with them. People believe epilepsy is contagious,” said Svosve.

Nelson Mandela once said that, “Most people are dying not because of the diseases they are suffering from, but from stigma and discrimination”. Epilepsy has been one of the conditions shrouded in misconceptions and negative attitude.

The World Health Organisation highlighted that about 90% cases of epilepsy are in Africa, and most of them go unreported. It is unfortunate that most of these people reside in poorly-resourced areas where they are either receiving inadequate treatment or no treatment at all (WHO report January 2009).

The condition has been misunderstood for a long time, with many believing it is a mental illness. This is also evidenced by the situation in most medical facilities in Zimbabwe, where people with epilepsy are treated at mental care centres like the Annex in Parirenyatwa Hospital.

Ignorance

The situation has been exacerbated by ignorance so much so that necessary precautions are not taken when assisting epilepsy sufferers. Accidental burns, bruises and marks are common features of epilepsy attacks.

‘Some seizures are triggered by fire because family members leave these women to do the cooking and if they fit, they can seriously injure themselves,” said Gomo.

Dr Gift Wilson Ngwende, President of the Zimbabwean Chapter of the International League Against Epilepsy, said that women with epilepsy were regarded as a special group with peculiar issues originating in their teenage hood.

“The Anti-Epileptic-Drugs has side effects during teenage hood – excessive hair growth (beard), rough skin, acne, hair loss, reduced IQ and other effects. This has been mainly caused by drugs like Phenytoin, Phenobarbitone and Sodium Valproate,” said Ngwende.

A report by the Disabled Women Support Organization states that there is a high rate of HIV/AIDS infection among women with disabilities – approximately 87, 4% have been sexually abused and, of these, 52, 4% were HIV positive. The reality strikes when women with epilepsy have children who also contract the virus.

In an open letter to the WHO, concerned Epilepsy specialists in sub-Saharan Africa warned of the dangers of drug interactions between antiretroviral treatment and some anti-epilepsy Drugs. They said the co-administration of these medications led to ART failure and resistance to other HIV drugs such as Nevirapine.

Sharing the load

Lorraine Mufuka (not her real name) was raped by her boyfriend after she had a seizure. The incident happened in 2004 and was impregnated in the process. The boyfriend refused responsibility of the child due to the woman’s epilepsy.

Gomo believes that women in these situations need to come together to share their experiences and get support for the very difficult circumstances they find themselves in. In this way, they can build their confidence and self-esteem, and be empowered to face challenges and be in charge of their lives.

“Psychosocial support is critical and women with epilepsy should not wait for anyone to change their plight, but should stand and spell out their destiny,” said Gomo.

Sekuru Svosve believes that people from different belief systems and backgrounds need to work together to demystify the stigma and discrimination these women and children are facing.

“Medical personnel, churches, traditional healers, parents and every member of society needs to help fight stigmatisation and discrimination affecting women with epilepsy,” he said.

Dr Ngwende believes that by rooting out stigma and embarking on educational training programmes for caregivers, medical personnel and the community, women with epilepsy can be supported within society.

“We should bring the subject to the fore by coming up with intensive campaigns, engage policy makers and educate everyone in the society,” Ngwende said.

Shumba has moved on with her life and has hope for a brighter future ahead.

“I have learnt to live with the disgrace brought about by the condition, but who wants disgrace? I’m focusing on my life and will play my part by giving light to those in darkness about epilepsy,” she said.

Post published in: News
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