Rural communities in Kenya are still consider epilepsy as a demonic curse and witchcraft making it difficult to treat the diseased, the World Health Organization says in in its latest report.
The report, "Epilepsy, a public health imperative" states that people suffering from epilepsy are initially taken to traditional healers. When everything fails, they are eventually taken to primary care providers.
Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behaviour, sensations, and sometimes loss of awareness.
Causes of epilepsy include injury at the time of birth, traumatic brain injury, infections of the brain such as meningitis and stroke, according to WHO.
Seizure symptoms vary from one person to another. Some simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs.
However, having a single seizure does not mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis.
The global agency estimates that epilepsy affects nearly 50 million people around the world, and 25 per cent of the cases can be prevented.
“A person with epilepsy that seeks help from a Christian healer may be offered prayer, exorcism, fasting, holy water and anointed oils,” the report says.
The largest gaps in epilepsy care are in communities where seizures are considered contagious through saliva or blood while some communities believe it is as a result of failure to comply with the cultural taboos.
Traditional treatments 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.
Others are made to smell the smoke of a struck match, given sweets during seizures or have water poured on their faces.
The report notes that most often people are unwilling to intervene to prevent injury or to provide first aid during a seizure since the disease is believed to be contagious.
“People with epilepsy frequently experience problems in marriage. In arranged marriages, families of women with epilepsy often hide the fact that they have epilepsy during marital negotiations due to fear that disclosure will lead to rejection of the proposed marriage,” the report says.
Hiding epilepsy, it says, is associated with increased rates of separation and divorce.
In health, insurance premiums are very high for people with epilepsy irrespective of seizure status or, as a pre-existing condition, may not be covered at all. Even if covered, visits to specialists and certain procedures are not likely to be covered.
“Most teachers have no formal training in epilepsy hence lack the confidence to handle children with epilepsy while in class," the report says.
The report also says people with epilepsy have lower employment rates. This is associated with stigma, fear, embarrassment, rejection and hostility by co-workers.
According to the report, misconceptions contribute to the burden of illness in epilepsy and lead to stigma, cause people with epilepsy to feel shame, embarrassment and disgrace.
The emotional impact of feeling socially excluded contributes to the physical, psychological and social burden of epilepsy.
This in turn, may delay appropriate health seeking, access to care, health financing and availability of treatment.
The report recommends that developing partnerships with traditional health practitioners may help to reach more people with epilepsy and is a strategy to improve access to effective treatment and alter misconceptions and stigmatizing practices.
The WHO also recommends that screening for pregnancy complications and the presence of trained birth attendants can help prevent injury around the time of birth.
“Immunization against pneumonia and meningitis, malaria control programmes in endemic areas, initiatives to reduce road traffic injuries, violence and falls, and health and community interventions to prevent high blood pressure, diabetes, obesity and tobacco use can all help reduce epilepsy rates.”
To reduce stigma, WHO recommends that funds need to be directed toward epilepsy awareness and stigma-reduction programmes for the wider public.
Policy-makers have been called upon to reduce stigma by changing legislation beginning with discriminatory driving, education, employment and marriage laws.
The WHO says epilepsy affects people of all ages, with peaks among children and those aged above 60 years.
(Edited by P.Wanambisi)
