By Opija Raduk
Most people in Kenya and other low and middle-income countries see epilepsy as a demonic curse and witchcraft making it difficult to treat people with this disease, World Health Organisation (WHO) says in a recent report.
Epilepsy affects around 50 million people worldwide with 25 percent of the cases can being preventable. Its causes include injury at birth, stroke, infections of the brain such as meningitis and traumatic brain injury, says WHO.
According to America Epilepsy Society, epilepsy is a brain disease characterized by abnormal brain activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. It carries neurological, cognitive, psychological and social consequences and accounts for a significant proportion of the world’s burden of disease.
The report, “Epilepsy, a public health imperative”, says that people with epilepsy and their families may be confronted with social shunning and outright discrimination in part due to misconceptions that have existed for centuries.
In rural communities there are some traditional treatments which can lead to dangerous actions such as placing a spoon or cloth in the mouth, tying a person down or putting their head in a toilet hole.
The survey identifies three prevalent misconceptions that can fuel stigma in epilepsy: people with epilepsy are contagious, crazy and possessed by demons, bewitched or punished by gods.
Many of these misconceptions which are not true originated in times when there was a poor understanding of brain diseases. Most of these misconceptions are prevalent in cultural communities where there is poor knowledge of epilepsy or a lack of access to evidence-based treatment.
The largest gaps in epilepsy treatment are in communities where seizures are considered contagious through saliva or blood while some communities believe it is as a result of failure comply with the cultural taboos.
These misconceptions contribute to the burden of illness in epilepsy and lead to stigma. They cause people with epilepsy to feel shame, embarrassment and disgrace. The report notes that the emotional impact of feeling socially excluded contributes to the physical, psychological and social burden of epilepsy. The stigma can delay appropriate health seeking, access to care, health financing and availability of treatment.
“The stigma associated with epilepsy is one of the main factors preventing people from seeking treatment,” says Dr Martin Brodie, President of the International Bureau for Epilepsy.
Dr Brodie observes that many children with epilepsy do not go to school and adults are denied work, the right to drive and even to get married.
Globally, stigmatized people with epilepsy are more likely to have lower self-esteem and quality of life, greater social isolation, poorer psychological health and worse epilepsy control. The burden of stigma, however, is greatest for people who live in low-income, less developed settings, and for this reason, stigma contributes to social and economic morbidity. Further stresses and stigmatization can occur to those who are elderly.
Moreover, in fearing contamination or alienation from others, families may banish the person with epilepsy from the community to live as outcasts or force them to live in separate sleeping quarters away from the rest of the household.
In an effort to help the epileptics, a programme “Reducing the epilepsy treatment gap” has been established such that 6.5 million more people have access to treatment for epilepsy should they need it.
“We know how to reduce the epilepsy treatment gap. Now action to introduce the measures needed to make difference needs to be accelerated,” says Dr Samuel Wiebe, President of the International League Against Epilepsy.
“Ensuring uninterrupted supply of access to antiseizure medicines is one of the highest priorities, as is training of non-specialist health providers working in primary health-care centres.” Contacts: bruniera@who.int and lindmeierch@who.int.
