Forum: Have laws to guarantee rights of those with epilepsy

International Epilepsy Day will be observed in more than 130 countries today. The aim is to raise awareness of epilepsy around the world and highlight the problems faced by people with epilepsy, their families and caregivers.

Epilepsy is a brain disease characterised 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, affecting around 50 million people of all ages worldwide.

The risk of premature death in people with epilepsy is up to three times that of the general population. Roughly half of adults with epilepsy have at least one other health condition. Psychiatric conditions, such as depression and anxiety, make seizures worse and reduce quality of life.

Epilepsy has significant economic implications in terms of healthcare needs and lost productivity at work.

Epilepsy affects many areas of life, including lifestyles, education, employment and parenthood. Coping with this chronic brain disease is an extreme challenge for those affected and their families. Because of the many myths and stigmas still associated with the illness, many people with epilepsy prefer to remain in the shadows – there is a facelessness to epilepsy.

In some parts of the world, people with epilepsy are the target of discrimination and rights violations. The stigma of epilepsy can discourage people from seeking treatment and has consequences for quality of life and social inclusion.

Improving knowledge and raising awareness of epilepsy in schools, workplaces, and communities is needed to reduce stigma. Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to healthcare services, and raise the quality of life for people with epilepsy.

The World Health Organisation’s Resolution WHA68.20 is directed at the global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications. It sets the framework for increasing investment in epilepsy.

There is a pressing need for increased investment in research and to address the burden of epilepsy through integration in primary healthcare, ensuring that all people with epilepsy have access to quality and affordable care.

It is important for society to be aware that support for people with epilepsy together with public health education are just as important as good organised treatment in the management of this condition. People with epilepsy do not want sympathy. They want society’s understanding and support.

Epilepsy Care Group (Singapore) would like to see epilepsy prioritised in public health agendas, with appropriate legislation to guarantee the rights of people with epilepsy so that they can be empowered to maximise their quality of life.

Goh Keng Hwee

Executive Director

Epilepsy Care Group (Singapore)