BENIN, Nigeria — When Angela Acemota’s son began suffering a seizure in 1996 at the age of six, people led him to condemn that he was owned by evil spirits and to seek healing from native healers and religious clergy. He underwent several traditional rituals and ate various concoctions, but the seizures lasted. In 2004, in her fourth year at secondary school, she took him to the hospital, where he was diagnosed with epilepsy and began taking medication.
“For many years I went to post from the pillar. I was ignorant about epilepsy and didn’t know it was a medical condition. Native healers and religious figures said my son was cursed. They believed that the seizure was caused by the power of a witch, wizard or demon due to false beliefs and misunderstandings.
Epilepsy is a brain disorder that affects around 50 million people worldwide, with nearly 80% living in difficult-to-treat low- and middle-income countries. In Nigeria, approximately 1.7 million people have a condition based on the prevalence of eight cases per 1,000 people.
This disorder causes repeated attacks due to abnormal brain activity. There is no cure, but the medication helps to control it. However, in many African communities, epilepsy is often associated with magic and demonic possessions, so they seek prayers and traditional healers instead of treatment. This stigma restricts access to health care and ensures that more than 75% of patients with epilepsy in Africa do not receive appropriate medical care.
Airf is outreaching to teach younger students about epilepsy. Courtesy: Eaarf
People with epilepsy in Africa often face discrimination and rejection. Many children in this state are denied access to school, but adults have a hard time finding work, as they fear they may have a seizure at work. Even within families, some epilepsy patients are unfairly separated or treated, which can lead to depression, anxiety, low self-esteem and, in extreme cases, suicide.
The Curse of Stigma
“The stigma around epilepsy is worse than the epilepsy itself. You are stigmatized by your family, relatives, step-by-laws, friends. Provide support to stigma and those with that condition.
After seeing how epilepsy can be managed with medication, she has been raising awareness and supporters of early diagnosis and treatment since 2010. Her organization fights patient rights, empowers the community, trains healthcare workers, and runs awareness campaigns through schools, churches, radio and social media. It also provides medical and material support to people with epilepsy.
Doctor Nicholas Adelint believes the campaign against epilepsy stigma is extremely important as it encourages people to seek medical care. Without treatment, he argued that epilepsy-related attacks could be fatal.
“I think the prevalence of epilepsy in Africa is underreported because many people don’t seek medical care because of social stigma. This underreport affects the accuracy of prevalence data, which leads to inadequate attention from policymakers and limited funding. It remains rare and people living with epilepsy do not receive the appropriate care they need.”
Gender-based violence
For Elsie Chick, a teacher at Doala in Cameroon, epileptic stigma sacrificed her relationship. Her partner abandoned her eight years ago after discovering she had epilepsy. In Central African countries, high prevalence of epilepsy has become a national health concern.
“I never said I had epilepsy until I was pregnant. Most of the time I was scared of what people would think, so I kept it from him. He never asked to ask about the baby.
She said, “Many times I cried. There was a moment when I was hoping to wake up and be free from epilepsy. I slept at night and wanted to hear God say, “Daughter, you’re healed.” ”
Dr. Mundi Nohler, founder of the Epilepsy Recognition, Aid and Research Foundation (EAARF), a nonprofit organization based in Bamenda, Cameroon, worries that epilepsy stigma will only help strengthen gender-based violence against women in Africa. She said the myths surrounding epilepsy contribute to the sacrifice of women.
Young Eaarf activist with epilepsy campaign message. Courtesy: Eaarf
“Women with epilepsy are not valued and are at a higher risk of gender-based violence. Many believe that women pass their condition to their spouses and children. They are also vulnerable to sexual violence, but even the police often don’t want to seek justice for them. One woman I know remains in toxic marriages because many of these women fear that no one will love or accept them leaving,” she said.
Through her initiative, Noler leads the network of epileptic survivors (at least women). These survivors visit the community, use mass media, including radio and social media to share stories, urging people to view epilepsy as a medical condition, not as a stigmatizing reason.
This community of women serves as a family for people like chicks. He says she’s getting better when she knows she can always talk to other women facing the same challenges.
“There are people around me who are struggling just like me, who are survivors, yet still face challenges. Knowing this gives me joy and peace and reminds me that I am not alone.”
“We empower women with epilepsy on how to deal with gender-based violence, even in rural communities,” Nohler said, stressing the importance of raising awareness at all levels of society.
“Even policymakers need to understand what epilepsy is. Many of them still retain myths and misunderstandings. For this reason, they may never consider policies that support people with epilepsy.”
Dealing with epilepsy
Ten years ago, at the 68th UN World Health Parliament, 194 countries, including African countries, committed to strengthening their efforts to address epilepsy. The pledge raised hopes for support for people living in a state. However, critics argue that many African governments’ actions are inadequate, forcing individuals and families affected by epilepsy to rely primarily on charities and non-governmental organizations.
Action Amos, the International Bureau of Epilepsy Regional Program Coordinator, attributes this shortage to the lack of a structured framework that guides the adoption of a comprehensive and sustainable approach to epileptic care.
However, he said, “Since May 2022, the intersector’s global action plan on epilepsy and other neurological disorders has provided a blueprint to help governments develop strategies to place epilepsy in their plans, protocols, and health agendas.
Amos emphasized the importance of attracting traditional and religious leaders who are deeply embedded in the community and often serve as the initial contact points for those seeking help. He emphasized the need to help them realize that epilepsy is a health condition, not a mental issue.
“Bridge the gap between traditional healers and healthcare professionals is essential to ensuring that people with epilepsy receive the best possible care. Traditional and faith healers need to be educated and trained about epilepsy and its causes.
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Asemota worries that epilepsy patients will continue to be isolated due to limited access to medication and inadequate medical facilities. She argues that, as available in many African countries, the Nigerian government does not provide sufficient support to those living with epilepsy, particularly in terms of subsidizing the costs of drugs.
The Angie Epilepsy Foundation gathers against epileptic stigma in Nigeria. Courtesy: Angie Epilepsy Foundation
“Many people aren’t buying medicines because they can’t afford it anymore. This will bring them back to native healers. When you have a miserable need, you are vulnerable. You go back to native healers. This is dangerous. Drugs are now expensive.
However, not only is it difficult to get medicine, but there are few neurologists in Africa. This issue is exacerbated by many healthcare workers leaving the continent for better opportunities abroad. Without a neurologist trained to diagnose patients, prescribe appropriate treatment and provide ongoing care, many people with epilepsy face serious risks to their health and livelihoods.
“The government needs to invest in training healthcare professionals and improving healthcare infrastructure, including increasing the number of neurologists. In most countries, epilepsy is treated by a psychiatrist or specialist, so appropriate support is also needed.
Chick doesn’t think that epileptic stigma will soon decrease, as many African communities still appreciate the myth.
“But I believe that if we are working hard on advocacy, some people will understand that epilepsy is not a curse,” she told Interpress Service.
IPS UN Bureau Report
