Challenging Misconceptions: Eliminating Misinformation Impediments in Epilepsy Care Management

In a world where epilepsy affects around 50 million people, the disease poses significant challenges, particularly in low- and middle-income countries. These regions often see a threefold increase in the risk of premature death among those suffering from epilepsy.

One of the key issues is the lack of treatment availability. Many patients in low-income countries receive no treatment due to the low availability of antiseizure medicines. This unfortunate reality leads to preventable deaths, such as those caused by drowning, burns, falls, or prolonged seizures.

Epilepsy is not contagious, and a single seizure does not automatically mean a diagnosis. The condition is diagnosed when two or more unprovoked seizures occur. In half of the cases, the cause remains unknown, with known causes including birth complications, congenital abnormalities, head injury, stroke, brain infections, genetic syndromes, and brain tumors.

Despite these facts, epilepsy is often shrouded in misconceptions. In many communities, the disease is wrongly believed to be the result of curses, witchcraft, or demonic possession. These beliefs prevent people from seeking the treatment they urgently need.

Organisations like Kawe, based in Kenya, are working to combat these misconceptions. They run an "epilepsy cascade target" programme to ensure that 90% of people with epilepsy understand their diagnosis as a treatable brain disorder. Kawe also uses "stigma benches" for community members to openly discuss myths and misconceptions about epilepsy.

Chiefs and health promoters are also trained and given materials to spread awareness more widely. Most epilepsy can be managed at the primary health-care level, without advanced equipment.

Prevention of epilepsy could avoid a quarter of cases through measures such as improving perinatal care, controlling fevers in children, reducing head injuries, and managing cardiovascular risks to prevent strokes. With proper use of antiseizure medicines, up to 70% of patients could live seizure-free.

In the fight against epilepsy, it is crucial to address both the medical and societal aspects of the disease. By challenging misconceptions, improving access to treatment, and focusing on prevention, we can work towards a future where epilepsy no longer poses such a significant threat to the lives of millions.

Nicholas Otieno, affiliated with an organisation involved in HIV prevention and mother-to-child transmission care in Kenya, is also part of research on interactive text messaging adherence in such programs. His work underscores the importance of effective communication in managing chronic diseases like epilepsy.

Challenging Misconceptions: Eliminating Misinformation Impediments in Epilepsy Care Management