Empowering Hope: Breaking the Chains of Epilepsy Stigma in Africa.
Bakare Aminat K. (MBBS, MBA, FWACP)
Lead Consultant Physician / Neurologist @ TANIMAB HEALTHCARE LIMITED
Epilepsy is a neurological condition that affects millions of people worldwide, and it is often associated with stigma and misunderstanding, particularly in sub-Saharan Africa(1). "Empowering Hope: Breaking the Chains of Epilepsy Stigma in Africa" is a poignant call to action, highlighting the urgent need to address the pervasive stigma surrounding epilepsy in the African continent. Epilepsy, a neurological disorder characterized by recurrent seizures, affects millions of people worldwide, with a disproportionately high burden in low- and middle-income countries, including those in Africa (1).
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"From Ignorance to Understanding: Education as a Weapon Against Epilepsy Stigma"
Stigma affects all aspects of epilepsy care, from diagnosis and treatment to nationwide legislation and budget allocations[1]. It affects the lives of people with epilepsy when they are not given equal access to education, employment, and social opportunities[1]. A population-based study in the United States found that one-third of respondents identified stigma—not seizures—as the most significant challenge for people with epilepsy[1].
Three types of stigma must be addressed to close the treatment gap and improve the lives of people with epilepsy: Internalized, Interpersonal, and Institutional[1]. Internalized stigma refers to the negative views that people with epilepsy hold about themselves, while interpersonal stigma refers to the negative views and discriminatory behavior that others hold towards people with epilepsy[1]. Institutional stigma refers to the discriminatory policies and practices of institutions, such as schools and workplaces, towards people with epilepsy[1].
A systematic review of felt and enacted stigma in epilepsy found that negative attitudes towards people with epilepsy were described in 100% of studies, and these attitudes originated in all groups, including the general public, teachers, students, health care professionals, and people living with epilepsy[1]. Enacted stigma, or episodes of discrimination against people with epilepsy, was associated with poor epilepsy knowledge, less education, lower socioeconomic status, living in a rural area, and religious group identity[1]. Felt stigma, or anticipating or assuming negative views of others, was linked with higher seizure frequency, younger age at epilepsy onset, poorer knowledge about epilepsy, and less education[1]. Felt stigma was also associated with increased risks of psychological difficulties and impaired quality of life[1]
"Unveiling the Epidemic: The Harsh Reality of Epilepsy Stigma in Africa"
In Nigeria, epilepsy is a significant public health concern, with an estimated prevalence of 0.8% to 2.3% of the population, according to the World Health Organization(3). Despite the high prevalence, epilepsy remains highly stigmatized in Nigerian society, with widespread misconceptions and discrimination against affected individuals. Limited access to healthcare services, especially in rural areas, further exacerbates the challenges faced by people with epilepsy in Nigeria.
The stigma surrounding epilepsy is deeply entrenched in cultural beliefs, myths, and misconceptions (4). In many African societies, epilepsy is often misunderstood as a result of supernatural forces, curses, or spiritual possession rather than a medical condition (5). This ignorance fuels discrimination, social exclusion, and even violence against individuals living with epilepsy. Consequently, those affected by the condition face significant barriers to accessing healthcare, education, employment, and social opportunities (6)
Similarly, in Ghana, epilepsy affects a significant portion of the population, with prevalence rates ranging from 0.7% to 1.1%, according to a study published in the journal Epilepsy & Behavior(7). Despite efforts to raise awareness and improve access to epilepsy treatment, stigma remains a major barrier to care in Ghana, leading to delays in diagnosis, inadequate treatment, and poor health outcomes for affected individuals.
?"Silent Struggles: The Hidden Toll of Epilepsy Stigma on Individuals and Communities"
The stigma associated with epilepsy not only exacerbates the physical and psychological challenges faced by individuals with the condition but also hampers their ability to lead fulfilling lives. Many people living with epilepsy in Africa experience isolation, ridicule, and marginalization, leading to low self-esteem, depression, and anxiety (7). Moreover, the fear of stigma often prevents individuals from seeking medical treatment or adhering to prescribed medication regimens, thereby exacerbating their health outcomes and increasing the risk of disability and premature death.
In many African communities, epilepsy is stigmatized and misunderstood due to superstitions and cultural beliefs(3). People with epilepsy are often viewed as possessed by evil spirits or witches, leading to discrimination, exclusion from society, and hindrances in seeking medical treatment(5). This stigma results in significant challenges such as unemployment, divorce, marginalization, isolation, and low self-esteem among individuals with epilepsy. Moreover, societal misconceptions contribute to decreased school attendance, lack of academic ambition, and overall reduced quality of life for those living with epilepsy.
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''Hope in Action: Empowering Initiatives to Combat Epilepsy Stigma Across Africa"
Efforts to combat epilepsy stigma in Africa require a multi-faceted approach that addresses socio-cultural, economic, and healthcare-related factors. Key strategies include:
The International Bureau for Epilepsy (IBE) has developed an Advocate's Toolkit for Reducing Epilepsy Stigma in Africa, which is full of resources, ideas, and guidance for addressing and dismantling stigma in various communities on the African continent. The toolkit is designed to help advocates be proactive in shaping communities that are inclusive of the needs of all people with epilepsy(8).
The toolkit is a 'how-to' guide for recognizing distinct types and forms of stigma, containing practical information, best practice examples, case studies, and templates to enhance an advocate's capacity to engage in effective stigma reduction interventions. It is a companion to the Advocate's Toolkit for Making Epilepsy a Health Priority in Africa, emphasizing the importance of having people with epilepsy engaged in the development of stigma reduction interventions(8).
The Epilepsy Foundation, in collaboration with the Center for Disease Control & Prevention, launched "Change Our Epilepsy Story," a public health campaign to reduce the stigma associated with epilepsy(9).
In conclusion, stigma is a major challenge for people with epilepsy in Africa. The IBE’s Advocate’s Toolkit for Reducing Epilepsy Stigma in Africa is a valuable resource for empowering people with epilepsy to lead the way in reducing stigma and advocating for their rights. Addressing stigma and discrimination in a multifaceted approach that involves education, awareness, and community engagement is crucial for improving the lives of people with epilepsy in Africa, and the IBE’s toolkit is an important step towards achieving this goal. By implementing comprehensive strategies and engaging individuals with epilepsy and their families in advocacy efforts, we can help dismantle stigma and promote a more nuanced understanding of epilepsy in African communities.
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