Let’s fight stigma linked to epilepsy as world commemorates this day

As Kenya joins other countries to mark the International Epilepsy Day, more concerted efforts are needed to enhance diagnosis of the condition and access to effective treatments, as well as minimise prevailing social stigma facing persons with epilepsy.

The day is marked globally every year on the second Monday of February to promote awareness of epilepsy and bring to light the considerable challenges faced by people with epilepsy, their families and caregivers. A photography competition themed ‘Life is Beautiful’, is a highlight of this year’s International Epilepsy Day.

This day was started and organised as a joint initiative by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE). Epilepsy (referred to as ‘Kifafa’ in Kiswahili) is one of the most common neurological disorders, and is characterised by repeated unprovoked seizures caused by abnormal or excessive electrical discharges in the brain. In many cases of epilepsy, the cause remains unknown.

Epileptic seizures can range from brief and almost undetectable episodes, to extended periods of vigorous shaking which can sometimes result in physical injuries. Epilepsy is most frequently diagnosed in early childhood, but is not limited to any age group (though there is a higher incidence in both life extremes); it knows no race, sex or social boundaries.

Statistics

As per the Kenya National Guidelines for the Management of epilepsy, 70 million people worldwide are estimated to have epilepsy – with 50 million of these having no access to quality treatment and care. The incidence is higher in developing countries due to increased risk factors that may predispose persons to brain damage such as pregnancy and delivery complications, meningitis, malaria, HIV/AIDS and trauma.

In Kenya, it is estimated that about 800,000 to 1 million people are living with epilepsy. Despite being one of the oldest conditions known to mankind, people with epilepsy and their families often face various forms of stigma and discrimination, largely due to ignorance which results in a lot of myths and misconceptions.

Stigma is also compounded by fear that people have towards the disease, due to lack of awareness, with resultant mistreatment of people with epilepsy. Epilepsy is a chronic disorder that requires long-term follow-up. Due to stigma, many people with epilepsy often face challenges in accessing and adhering to appropriate treatment.

Thanks to concerted efforts from the Ministry of Health and the private sector, the management of epilepsy in Kenya has progressively improved over the years. With the continued dedication and commitment from bodies such as the National Epilepsy Coordination Committee (NECC), Kenya Association for the Welfare of People with Epilepsy (Kawe), Youth on the Move, as well as other stakeholders, we can win the war against Epilepsy.

However, several challenges remain. For instance, there is still a limited number of medical personnel that have been trained to diagnose and manage epilepsy. Further, there are very few specialist consultants to whom complex cases of epilepsy or those not responding well to treatment may be referred.

Stigma

Whereas with effective antiepileptic treatment the majority will respond well, there still exists a large treatment gap of at least 80 per cent in developing countries such as Kenya, compared to less than 10 per cent in high income countries. Treatment gap refers to the proportion of people with active epilepsy who are not accessing appropriate treatment. Therefore, there is a pressing need to increase access to effective, safe and affordable anti-epileptic drugs for every patient with epilepsy.

Moreover, stigma associated with epilepsy needs to be addressed effectively as doing so increases health-seeking behaviour for those with epilepsy, and helps to avoid long term complications of sub-optimal management. To do so, it is essential to have more epilepsy sensitisation to increase the level of understanding of the disease within the population, and reduce the myths and misconceptions that continue to be perpetuated.

Research initiatives to gather appropriate data on epilepsy and its management from a local perspective is vital. Also, there is strong need for increased research and development of new effective anti-epileptic drugs with favourable safety and tolerability profiles that can be used against different groups of patients in the long-term management of epilepsy. With good adherence to appropriate anti-epileptic drugs, the majority of people with epilepsy will respond well to treatment and live a seizure-free life.

The World Epilepsy Day serves as a reminder that we need to come together to advocate for recognition of epilepsy as a public health priority and increase access to adequate and affordable treatment for all, that they may achieve the highest standard of health, improve their livelihood and optimise their quality of life.

Dr Kisare is a public health specialist and a medical adviser at GlaxoSmithKline Pharmaceuticals Kenya Limited. [email protected]