Unveiling Misconceptions: Combating Misguided Notions Impeding Epilepsy Care

Epilepsy, a chronic non-communicable disease of the brain, affects around 50 million people worldwide. This condition, which is among the world's oldest recognized medical conditions, with written records dating back to 4000 BC, continues to be shrouded in misconceptions, particularly in many communities.

In Kenya, the Kenya Association for the Welfare of People with Epilepsy (Kawe) is working diligently to combat these misunderstandings and myths. Their innovative approach involves the use of "stigma benches," where community members can openly discuss and debunk myths and misconceptions about epilepsy.

One of the most persistent misconceptions is that epilepsy is contagious, but it is not. Despite this, epilepsy is still wrongly believed to be the result of curses, witchcraft, or demonic possession in many communities. This stigma prevents people from seeking necessary medical treatment for epilepsy.

Chiefs and health promoters are trained and given materials by Kawe to spread awareness about epilepsy more widely. The organisation's efforts are part of the "epilepsy cascade target" programme, aiming to ensure 90% of people with epilepsy understand their diagnosis as a treatable brain disorder.

Prevention matters, and a quarter of epilepsy cases could be avoided through measures such as improving perinatal care, controlling fevers in children, reducing head injuries, and managing cardiovascular risks to prevent strokes. In many low-income countries, three-quarters of epilepsy patients receive no treatment due to the low availability of antiseizure medicines. Studies show that in such countries, the average availability of generic drugs in public health systems is below 50%.

Fortunately, most epilepsy can be managed at the primary health-care level without advanced equipment. Up to 70% of epilepsy patients could live seizure-free with proper use of antiseizure medicines. Patients who remain seizure-free for two years may, under medical guidance, stop medication.

However, the risk of premature death for people with epilepsy is up to three times higher than in the general population, particularly in low- and middle-income countries. Many deaths among people with epilepsy are preventable, such as those caused by drowning, burns, falls, or prolonged seizures. People with epilepsy often face injuries such as fractures and bruising, as well as higher rates of anxiety and depression.

Medical experts classify epilepsy according to cause: symptomatic, cryptogenic, and idiopathic. Symptomatic epilepsy is linked to identifiable brain pathology, cryptogenic arises when a cause is suspected but not proven, and idiopathic has no established cause but is believed to have a genetic basis. Known causes of epilepsy include birth complications, congenital abnormalities, head injury, stroke, brain infections, genetic syndromes, and brain tumors.

In half of epilepsy cases, the cause remains unknown. Seizures, the defining symptom of epilepsy, can range from brief lapses in attention or muscle jerks to severe and prolonged convulsions. Despite the wide range of severity, it is crucial to remember that with proper understanding, treatment, and prevention measures, many people with epilepsy can live healthy, seizure-free lives.