These women are kept separate from their families because they are epileptic.
Epilepsy in Africa: Part 2 in a Series
LUSAKA, ZAMBIA – Charles Banda, 13, enjoys playing and helping out with household chores like his siblings. But unlike his siblings, Charles has epilepsy.
Wearing a light blue T-shirt, Charles sits on a plastic chair surrounded by his siblings and friends as they sell dried fish and vegetables outside their home in John Laing, a compound south of Lusaka, the capital. Charles is too shy to say a word.
Mary Banda, his mother, is wrapped in a chitenge, a garment similar to a sarong. She says that while Charles was growing up, saliva poured constantly from his mouth. But she says she and her husband didn’t realize he was epileptic or that he had seizures when all were fast asleep at night.
Then last year, Banda says they heard Charles having a seizure one night in their home.
“I heard a sharp voice scream from Charles’ room,” his mother says. “I rushed to his bedroom he shares with his siblings only to see that my child was fitting.”
Adjusting the wooden stool she is sitting on, she says she was terrified.
“I was so scared because it was the first time I saw him fit,” Banda says.
Banda says the first thought that came to her mind was that her child had been bewitched. So she turned to traditional medicine.
“I have used traditional medicine before,” she says. “I used to apply the medication on my child[’s] lips, and others he [used to] drink.”
But she says the traditional medication didn’t work.
“My child never got well,” she says. “His condition did not improve. I don’t trust traditional medication anymore and couldn’t love to use them again.”
She says she worries about Charles’ safety during his seizures.
“I am worried for my boy because he normally has these fits when he is fast asleep,” she says. “I fear for him.”
Charles attends school at St. Lawrence, a school for vulnerable, mentally and physically challenged children. Banda says her son is not yet on epileptic medication but hopes he will be soon.
“I now take him for prayers and am planning to put him on an epileptic program as well as take him to the clinic for further examinations,” she says.
Although doctors suspect the prevalence of epilepsy in Zambia is high, treatment and statistics are limited because of the stigma attached to epilepsy here. Doctors and people with epilepsy say medication can control seizures. But many still rely on traditional healers, who say they can cure epilepsy. The government provides free medication to people with epilepsy and includes epilepsy under its mental health policy, but some say it deserves its own policy. Meanwhile, organizations strive to spread awareness about epilepsy and dispel myths that prevent people from receiving care to improve their quality of life.
Epilepsy is a serious condition caused by a sudden change in the operation of the brain, causing physical changes called epileptic seizures, says a local medical practitioner, who declined to be named.
About 80 percent of people with epilepsy, which affects 50 million people worldwide, live in the developing world, according to a 2010 World Health Organization report. More than 70 percent of patients who are treated with anti-epileptic medication are able to live seizure-free within five years of diagnosis. Yet in Zambia, the epilepsy treatment gap – the proportion of people with epilepsy who require treatment but do not receive it – is more than 95 percent.
“The prevalence of epilepsy in Zambia is so high,” says Anthony Zimba, president of the Epilepsy Association of Zambia.
Epilepsy Association of Zambia is an organization working to advocate for patients with epilepsy and provide services such as counseling and treatment. It has clinics in Lusaka and in compounds such as Chawama and Madevu.
Zimba says the exact number of people with epilepsy in Zambia is not known. In 2009 alone, more than 2,000 cases were registered at health centers. He says that many more people are affected, but because of the stigma associated with epilepsy, they don’t access the medication they need and, therefore, can’t be counted at clinics.
“The biggest problem with epilepsy is stigma and the thought that epilepsy is an African condition and treated in a traditional way,” Zimba says. “Relatives and caregivers do not think of hospitals and view epilepsy as traditional because it is associated with witchdoctors, demon-possessed.”
Chabadwa Phiri, 25, who has epilepsy, says his parents made him visit a traditional healer.
Phiri has light skin and is of medium height. He lives in Chongwe, a district in eastern Zambia, with his parents. Though a 12th-grade graduate, Phiri says he couldn’t continue his tertiary education because of his seizures, which usually occur under stress from school.
He first learned about his epilepsy when he was 14. He had a terrible seizure, which made him fall unconscious.
“I didn’t realize what had happened to me by then,” he says. “I had several fits afterwards, and that’s how I knew I had kunu [epilepsy].”
Phiri says his parents made him visit several traditional healers who promised to cure his terrifying condition. He says he didn’t trust the healers but wanted to be an obedient child and do what his parents thought was best for him.
“I was given a lot of medication,” he says. “I used to boil the roots of trees as medications in water and drink the medicines. I could mix some in my food, eat it together with food.”
Phiri says he had to go in a nearby bush or rubbish pit early in the morning so no one would see him washing his entire naked body with the medication he received from the healers.
”I would walk alone in the dawn of the morning before anyone was awake to see me,” he says. “Only my family was aware of what I used to do.”
But instead of healing, Phiri says he developed different types of rashes on his body. He says his seizures also became more frequent.
Phiri says he eventually developed malaria on top of his seizures. He was rushed to the hospital. There, doctors advised him to start taking epilepsy medication, administered free of charge at local clinics.
“I learned about epilepsy medication at a local clinic when I had severe malaria and seizures,” he says. “I also discovered that epilepsy is not cured but rather controlled.”
But Elinet Mwinga, who has been a traditional healer for 30 years, argues that epilepsy can be cured – with traditional medicine. Mwinga sits in a plastic shack, where she sells medication.
On the table attached to the shelter is a display of a variety of roots and bottles of ashes made from roots. Mwinga, a widow, says she does not know her medication by name, but she is able to recognize the root and its usage by just looking at it.
“I have helped a lot of epilepsy patients,” she says.
She says epilepsy comes in many forms.
“There is what is known as lion epilepsy, frog epilepsy and many more,” she says. “Once we give them different combination of medicines, others vomit these frogs, which are visible to [me] and the victims.”
She says these frogs develop within the spinal cord. She says these frogs drain the spinal fluids and, in the process, stretch the nerves, which leads to seizures. But if the person vomits these frogs, then the person is cured.
Mwinga says she gives her clients medication, which they can add to foods such as porridge. But she advises the family members not to eat with them because she says epilepsy is contagious.
“I also give them medication used for bathing and drinking,” she says. “They should bathe far away from their home, far in the bush where people do not pass. Because immediately [when] other people step on the used medication and water, they will be infected with epilepsy.”
But Francis Chibwe, a nurse, says epilepsy is not contagious. He also says it can’t be cured but rather can only be controlled. He says that modern medication is more reliable than traditional cures in controlling epilepsy.
“There are no bacteria attached to epilepsy, and traditional medicine has not done well,” he says.
Chibwe says epilepsy can also be hereditary. He says it can develop because of various factors, such as accidents and alcoholism. He says that fits can cause damage to the brain and can lead to mental illness, but that medication administered at health institutes can control them.
Zimba says that the government is helping the association in many ways. Chibwa and Zimba say that the government administers free medication for epilepsy patients and has a rehabilitation center for people with epilepsy at Chainama Hills Hospital in Lusaka.
Thandiwe Banda, first lady of Zambia, serves as matron of the Epilepsy Association of Zambia and is involved in raising awareness about epilepsy and reducing the stigma surrounding it.
The government also includes epilepsy under its mental health policy. But Zimba says that mental health encompasses a lot of issues, so the government should create a specific policy for epilepsy.
“To effectively address the gap in epilepsy, it is important to have an epilepsy-centered policy,” he says.
Phiri says epilepsy is different from mental illness and should not be linked to mental health. When epilepsy is associated with mental health, it brings about a stigma, he says. He says it’s important to have an epilepsy policy that stands alone in order to address the many challenges associated specifically with epilepsy.
Local governmental officials declined to comment on the government’s stance on a policy for epilepsy in light of elections this month.
Meanwhile, other organizations are striving to close the gap in epilepsy awareness and dispel myths surrounding it.
Zimba says that if the organization receives funding, it plans to expand to other parts of the country and open a skills center for epilepsy patients, as most of them remain vulnerable.
“We need to train caregivers in the community so as to sensitize people on epilepsy,” Zimba says. “But as an association, we do not have funds for such activities.”
Phiri also plans on educating the many people in his district about epilepsy and helping those with epilepsy to acquire skills.
He says he faces many forms of stigma, but that this has not kept him down. After dropping out of school, he started a jam-making business. He uses his earnings from the jam he sells to support himself and contribute at home.
Phiri says he spends his spare time sensitizing people about modern medication and gives talks on epilepsy at a clinic in his district. He says he even travels to other villages in order to spread awareness about the causes of epilepsy, its characteristics – including that it’s not contagious – and the means of controlling it. He says he is looking to start an organization that will help him expand his reach.
“It is important that people are sensitized that epilepsy is not cured, but it is controlled,” Phiri says.
