September 10, 2012
Epilepsy in Africa: Part 1 in a Series
BAFUT, CAMEROON – Mbolifor Stephanie, 18, dropped out of primary school in grade seven when she found out she had epilepsy.
She says it all began when she had a seizure one day while she was getting ready for school. She says it became hard to go to school because her teachers and classmates were too frightened to help her when she had seizures, thanks to myths that epilepsy is contagious and caused by witches’ curses.
“I dropped out of school and started learning a trade to become a hairdresser,” she says. “But even at work, I was always getting sick and having seizures.”
She says her seizure patterns have changed throughout the years.
“I used to have seizures weekly, but now I get seizures after a month,” she says. “And when I get seizures, it could occur like three times in a day.”
She says the unpredictability of her seizures and the frequency with which they can occur make it difficult for her to hold a job and even to perform routine chores at home.
“I think it’s just best for me to stay at home,” she says. “I do little or no work at home. I don’t cook because I can’t go near the fire.”
Stephanie’s mother, Lum Theresa, says that when Stephanie has seizures at home, the family stays up all night assisting her. Theresa says they put sticks in her mouth to keep her from biting and wounding her tongue.
“It could be very frightful to watch,” Theresa says. “We are all depressed when it does. If one gets a seizure even in church, people walk away because they are afraid that it is contagious and also that if someone who has epilepsy [fits] around them, they will contract the disease.”
Theresa says that Stephanie, a twin and the youngest of her five children, was much slower than her siblings growing up. But she says her family never imagined it was because of a health condition until Stephanie started having frequent seizures and a medical doctor diagnosed her with epilepsy. Theresa says the doctor prescribed her phenobarbital, a medicine that controls seizures, which Stephanie says has been effective.
“Right now, besides [to pick up] the tablets, I don’t go to the hospital,” Stephanie says.
But Stephanie can’t always get the medication she needs because her family can’t afford it. Her mother, a farmer, uses her produce to feed her family and sells the surplus in the village market.
So Stephanie also regularly visits a traditional healer, who Theresa says will get rid of the spell that they attribute her epilepsy to.
In their village, Mankah Bafut, located in Cameroon’s Northwest region, locals call epilepsy “awonkwoo,” which means “fall and die.” Because of this association of epilepsy with death, Stephanie tries to live life to the fullest. Theresa says her daughter is a young, beautiful girl who loves to socialize and attend social gatherings and parties like other girls in the village.
“As a youth, it is not always easy to restrain her,” Theresa says. “Sometimes her mind is made [up. She] wants to do what she wants and go where she wants to go. She tells me she will eventually die, so she wants to be free to live her life best she can.”
Doctors here say that diagnosing and treating epilepsy is not difficult, even with the limited resources available in Cameroon, but the stigma attached to epilepsy prevents many people from receiving the care they need. The government has identified epilepsy as an official public health issue and has been promoting research and expanding care. Meanwhile, nongovernmental organizations are spreading information to educate people about epilepsy. Still, many people think it’s a spiritual illness and seek cures from traditional healers, who critics say encourage harmful practices.
Dr. Samuel Angwafor, a medical doctor, says the prevalence of epilepsy in Cameroon is not known because the stigma surrounding epilepsy prevents people from seeking care. But Angwafor says that some studies have identified prevalence rates of up to 10 percent, which are among the highest in the world, in areas of the Mbam Valley, located in the Central region, and the Littoral region. Moreover, many areas with suspected high prevalence rates, such as Batibo and Ngie in the Northwest region, have not been studied yet.
The government assigned Angwafor to the Batibo health district to work with teams to improve care for epilepsy patients and to network with teams in other areas.
He says qualified health workers with knowledge of epilepsy can diagnose it as long as patients provide their medical history and undergo a physical examination. Health personnel can also use neurophysiological and neuroimaging studies to specify the diagnosis and guide treatment. These tools aren’t available in many district and regional hospitals, but Angwafor says they aren’t essential.
“One does not need to be a neurologist or even a physician to diagnose and treat epilepsy, especially in resource-limited settings like ours,” Angwafor says. “The current consensus is for the training of nonphysicians in the management of epilepsy, as there are few physicians and neurologist[s] in the country.”
Although there is no known cure for epilepsy, Angwafor says that up to 70 percent of people with epilepsy can control their seizures with phenobarbital, a cheap and available drug that can cost as little as 3,000 Central African francs, $6.45 USD, for a year’s worth of treatment.
But some people still can’t afford this. Others say that the stigma associated with epilepsy prevents them from accessing treatment. Angwafor attributes the stigma attached to people with epilepsy to the lack of information about its causes and characteristics.
The Ministry of Public Health officially recognized epilepsy as a public health issue in 2001 and has included epilepsy in the Health Sector Strategic Plan, currently in its 2006-2015 phase, according to a 2008 letter from André Mama Fouda, minister of public health. The Department of Disease Control has also developed the National Epilepsy Control Program to promote research on epilepsy.
Other organizations are also working to spread information about epilepsy, reduce its stigma and promote treatment, such as the Society of Cameroonian Neurologists, part of the World Federation of Neurology, and the Cameroon League Against Epilepsy, the country chapter of the International League Against Epilepsy.
But organizations providing care for people with epilepsy are few and nonexistent in most communities.
Nsom Kenneth, founder and coordinator of Community Development and Epilepsy Foundation, CODEF, says this neglect of a serious health issue drove him to establish this organization to work for and with people with epilepsy and their relatives. He says that all sorts of superstitious beliefs surround epilepsy and prevent people who need help from seeking conventional health care. As a result, reliable statistics about the condition are not readily available.
Kenneth says the need for more awareness in his community drove him to establish CODEF. He recounts an incident in which parents abandoned their toddler near a waterfall because they interpreted his frequent seizures as a spiritual attack and wanted to return the child to the spirit world where he belonged. The toddler disappeared a few days later.
Kenneth says he will also never forget the 4-year-old girl with epilepsy who suffered third-degree burns on her hand and arm after falling into a fire used for cooking during a seizure. Her family members were afraid to touch her during the seizure because they didn’t know how to handle it, so they left her in the fire until the seizure passed.
The family couldn’t afford to take the girl to the hospital, so the burn went untreated. She can no longer use her right arm from the elbow to the hand.
CODEF volunteers work to sensitize people with epilepsy and their communities about epilepsy, Kenneth says. They also assist patients with dressing and cleaning their wounds, which they often incur during seizures.
Joseph Che, a local volunteer with CODEF, says his daughter was diagnosed with epilepsy when she was a little girl. He attributes her epilepsy to the traditional practice of molding babies’ heads after they’re born to ensure a round shape.
He says that his daughter, now a teenager, behaves erratically. She can’t attend school or carry on other activities with children her age. Aside from managing her hygiene, there is little she can do for herself.
He says he used to take his daughter to a traditional healer, but he stopped after learning about epilepsy from CODEF, where he later joined as a volunteer. Now his daughter takes phenobarbital and depends on her family for support.
But Kenneth says that despite volunteers’ work in the field, many patients still believe strongly in the traditional healers because of the predominant thought that epilepsy stems from witches’ curses.
Fru Richard, a traditional healer, says that many people with epilepsy come to him for treatment. He says most patients come during the dry season, from mid-October to mid-March, and at the end of the month, when there is a full moon. He says this is because spiritual factors cause epilepsy.
“My treatment is peculiar with each case,” he says, explaining that each case is unique. “If it is purely physical, we put them on herbal treatment, but if it is spiritual, we combine the herbal treatment with healing and deliverance sessions.”
Richard says patients tell him that his treatment has either healed them or greatly reduced the frequency of their seizures.
Other people with epilepsy visit religious leaders for help.
The Rev. George Njonyu, pastor of Redeemed Christian Church of God, says that spiritual forces can sometimes cause illnesses such as epilepsy. In these cases, he believes that people can be healed in the name of Jesus Christ, whose saving power is more powerful than witchcraft. He quotes Matthew 17 from the Bible, in which Jesus drives a demon out of a boy.
Angwafor says it’s hard to evaluate the effect of traditional remedies.
“I cannot tell if traditional medicine is helping or not,” Angwafor says. “Nonetheless, we believe that traditional healers are easily accepted because of their socio-cultural familiarity with patients and their flexible costs.”
He says medical doctors hope to collaborate with the traditional healers in their joint goal to improve the quality of life for people with epilepsy.
“We have published data in the Batibo health district demonstrating the willingness of traditional healers to collaborate and be trained to identify and refer difficult cases to the hospital,” he says. “It is something we can to build on.”
But Kenneth says that even if collaboration were possible in the future, sometimes traditional healers mislead patients. He says they indulge in harmful health practices, like holding people with epilepsy upside down with their heads in toilets based on the belief that the foul odor from the pit latrines cures epilepsy.
Stephanie says her traditional healer advised her not to eat chicken, pork and other local dishes.
“The traditional healer who attends to me said I shouldn’t eat all such things because they provoke my seizures,” she says.
Even though her seizure medicine has helped reduce her seizures, Stephanie says she must depend on traditional medicine for a cure.
“My case is spiritual,” she says. “The traditional doctor said the illness was put in me by an old witch in my community. When the doctor reverses the curse, I will get well.”
Her only dream is to get well, she says. When that happens, she will go back to school to learn how to spell and write well.
Look for Epilepsy in Africa Part 2 from Zambia tomorrow on the GPI Newswire.