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#EpilepsyAwareness: Laying foundation for rights of people living with epilepsy

Readers Lounge By Fredrick Beuchi Mboya

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Despite being one of the world's oldest known medical conditions, public fear and misunderstanding about epilepsy persists, making many people reluctant to talk about it. That reluctance leads to lives lived in the shadows, discrimination in workplaces and communities, and a lack of funding for new therapy researches. For many people living with epilepsy, the misconceptions and discrimination can be more difficult to overcome than the seizures themselves.

These and many other facts laid the foundation for establishment of an International Epilepsy Day. Started in 2015 and organized by International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), the day provides a platform for people with epilepsy to share their experiences and stories with a global audience. The day also calls for all people to advocate for appropriate legislation that will guarantee human rights of people with epilepsy and encourages people with epilepsy to live to their fullest potential.

This year the National celebrations to mark International Epilepsy Day in Kenya will be on 10th February, 2020 in Kilifi County. The National Epilepsy Coordination Committee has partnered with KEMRI WellcomeTrust and Bank of Africa-Kenya to bring together key stakeholders in the health sector from National and County governments to break the silence on epilepsy awareness. The theme for this year’s event is “Epilepsy – A Global Health Imperative”.

Epilepsy affects nearly 50 million people of all ages around the world. A new report published by the World Health Organization (WHO), “Epilepsy, a public health imperative” presents a comprehensive picture of the impact of the condition on people with epilepsy, their families and communities

The report states that it is imperative to substantially scale up global efforts to address epilepsy. It calls for sustained and coordinated action to highlight epilepsy as a public health imperative, to increase investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research.

It also calls for action to ensure all people with epilepsy around the world have the opportunity to live free from stigma and discrimination. It says that “the human rights violations faced by people with epilepsy around the world are unacceptable”.

The report particularly focuses on low-income countries, where 75% of people living with epilepsy do not have access to effective and low-cost anti-seizure medicines. As a result, their risk of dying prematurely is increased and many are condemned to a life of stigma.

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“The treatment gap for epilepsy is unacceptably high, when we know that 70% of people with the condition can be seizure-free when they have access to medicines that can cost as little as US$5 per year and can be delivered through primary health systems,” said Dr Tarun Dua, from WHO’s Department of Mental Health and Substance Abuse.

The report estimates that 25% of cases globally can be prevented. It outlines that effective interventions can be delivered as part of broader public health responses in maternal and newborn health care, communicable disease control, injury prevention and cardiovascular health.

In low- and middle-income countries, early death among people with epilepsy is significantly higher than in high-income countries. Stigma about the condition is also widespread. “The stigma associated with epilepsy is one of the main factors preventing people from seeking treatment,” said Dr Martin Brodie, IBE President. “Many children with epilepsy do not go to school and adults are denied work, the right to drive and even to get married. These human rights violations experienced by people with epilepsy need to come to an end.”

The report also looks at co-morbidities - additional conditions co-occurring with a primary condition. It finds that roughly half of adults with epilepsy have at least one other health condition. The most common are depression and anxiety: 23% of adults with epilepsy will experience clinical depression during their lifetime and 20% will have anxiety. Mental health conditions such as these can make seizures worse and reduce quality of life. Development and learning difficulties are experienced by 30-40% of children with epilepsy.

- The writer is the National Epilepsy Coordination Committee (NECC) National Secretary, and an Epilepsy Awareness ambassador


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