What Do You Know About Epilepsy?

The Malaysian Society of Epilepsy aims to ‘bring epilepsy out of the shadows’ and educate the public about this often misunderstood disease.

Sixty-five million people around the world live with epilepsy, and nearly 80% are found in developing countries, including Malaysia.

Approximately 198,903 Malaysians were diagnosed with epilepsy in the year 2004.

Epilepsy is a chronic non-communicable disease of the brain characterised by recurrent seizures, and it can affect people of all ages. It is caused by disturbances in the electrical activity of the brain, and may be related to brain injury, tumour, infection, genetic tendency or developmental abnormality.

However, most of the time, the cause is unknown.

The diagnosis of epilepsy is usually made by a medical doctor, or most of the time, a neurologist or an epileptologist, where available. A neurologist specialises in neurological disorders that involves the brain, nerves and muscles.

More than 70% of patients respond to medical treatment, but the remaining 30% may need more than medications alone.

Epilepsy is under-recognised and often poorly funded with regard to clinical care and research. It is a treatable disease, yet about three quarters of affected people in developing countries do not have access to appropriate treatment.

In Asia, it has been said that 50-80% of epileptics are inadequately treated, and this is mostly due to socio-economic constraints in addition to poor knowledge and attitudes towards the illness.

Most people, especially those in rural areas, are deceptively influenced by their religious and cultural beliefs, which often lead to misconceptions of the disease.

This may be due in part to the mythical association of epilepsy with possession by demons and spirits.

Such persistent restrictions in our cultures lead to negative perceptions of people with epilepsy over many generations, and may in part be a cause of delays in medical treatment.

People with epilepsy are still being treated unfairly, trapped in discrimination and isolation. Sadly, epilepsy remains a hidden disease for many years due to the attached stigma.

In order to “bring epilepsy out of the shadows” and educate the public, many efforts have been made, either nationally or internationally.

The Malaysian Society of Epilepsy (Persatuan Epilepsi Malaysia) is an example of a collaborative effort made by patients, caregivers and medical personnel to educate the public on this illness.

Its main aims are to share experiences and challenges related to epilepsy, educate patients, caregivers and the public and improve the welfare of people with epilepsy.

Unfortunately, much of its work is limited by the lack of adequate financial support. This is mostly due to epilepsy being an underrecognised illness.

The Epilepsy Council Malaysia, a subspecialty council under the Malaysian Society of Neurosciences, is a non-profit organisation consisting of medical professionals. It aims to disseminate knowledge and training on epilepsy to healthcare professionals and the public.

Its efforts include training young medical professionals on epilepsy and collaboratively working with schools from various states in the country to disseminate information on epilepsy, among others.

There are many NGOs worldwide that act as strong advocates for epilepsy, but the three leading international organisations working on the disease are the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE).

Various efforts have been initiated over the past decade in different parts of the world to bring awareness about epilepsy to the public. One of the more well-known campaigns includes “Purple Day”, an epilepsy awareness day initiated by Cassidy Megan, a young girl who herself has epilepsy.

It was first launched internationally in 2009, and usually celebrated on March 26. People are encouraged to wear purple-coloured clothing and lavender ribbons as a symbol for epilepsy.

However, the celebration date may vary from one country to another.

In 2014, the IBE, in collaboration with ILAE, announced “International Epilepsy Day”, a global event celebrated annually on the second Monday of February to promote awareness on epilepsy.

The first International Epilepsy Day was celebrated worldwide on Feb 9, 2015. International Epilepsy Day provides a platform to lend a global voice to people with epilepsy.

This day allows people with epilepsy to share their stories, and show bravery in the face of adversity, demonstrating clearly that epilepsy is much more than seizures.

International Epilepsy Day is a major step forward in raising awareness and improving the lives of people with epilepsy throughout the world. This day calls for coordinated action to improve epilepsy care, to protect the civil rights of people with epilepsy, and to increase investment into epilepsy research.

We hope that the international day will raise visibility on epilepsy and encourage more people to discuss their illness.

It might be a small step for us as epilepsy advocates in Malaysia, but we are hoping that this campaign will help us reach out to everyone in the country. We want to break the silence and the stigma that surrounds people with epilepsy, and hopefully, our voices will finally be heard.

In conjunction with International Epilepsy Day, the neurology team from Universiti Malaya will be holding an Epilepsy Awareness Fair, which will take place from March 30 to April 3, 2015.

There will also be a talk on “Insurance for people with Epilepsy” on March 31. Details of this event can be found on the website.

■ Dr Sherrini Bazir Ahmad is a Consultant Physician and Neurologist at Subang Jaya Medical Centre, and the President of Malaysian Society of Epilepsy.