"Education is key to improving the social condition of people with epilepsy" 
Athanasios Covanis, President of the International Bureau for Epilepsy (IBE)
On average, one person in every 100 has epilepsy. Many people with epilepsy are suffering from the stigma attached to the disease. What should everybody know about it?
Several years ago, an Indian doctor who was a former member of the IBE board, summarised the history of epilepsy as 4,000 years of ignorance, superstition and stigma followed by 100 years of knowledge, superstition and stigma. This still holds true today. Epilepsy is much more than seizures and the stigma and discrimination that people with epilepsy face throughout the world can often be more difficult to deal with than the seizures themselves.
When it comes to epilepsy, every nation is still a developing nation in terms of its knowledge, understanding and acceptance of epilepsy and people who have the disease. Even in industrial nations, there remains a high level of ignorance about epilepsy. It is not contagious, it is not a mental disorder and, in about 60% of cases, it can be controlled with appropriate medication.
Epilepsy is the most common brain disease and affects 60 million people worldwide.
A common misconception is that there is only one type of epilepsy – generalized tonic-clonic seizures – where the person drops suddenly to the ground and begins to jerk uncontrollably. In reality, epilepsy is a range of syndromes, some of which, like absence seizures (where a person appears to be day dreaming for a few moments), are often not even recognised by people as being epilepsy.
What to do when you see someone having a seizure? For the most part, you need to do very little other than ensure that that there is a clear space around them so that they cannot injure themselves. You can place a pillow or coat under their heads and then wait with them until the seizure ends as they may be confused and disorientated. NEVER put anything in the person’s mouth! A seizure will last from a few moments to a few minutes. If the person begins to recover within 10 minutes they will not need medical assistance unless they have injured themselves during the seizure. More than 10 minutes or if they begin to have another seizure, then you need to call for an ambulance.
IBE’s vision is a world where fear and ignorance about epilepsy are replaced by understanding and care. How important is the 10th Asian & Oceanian Epilepsy Congress (AOEC) in order to achieve that?
With stigma being one of the major social problems for people with epilepsy, creating awareness and bringing epilepsy ‘out of the shadows’ can play a major role in increasing knowledge and developing understanding. During a congress, we would expect to receive a high level of media coverage that can play a big part in this exercise.
From the medical point of view, congresses are an important element of continuing education in epilepsy where medical professionals come together to learn about new developments in epilepsy care and treatment. The 10th Asian & Oceanian Epilepsy Congress will attract the most eminent experts in epileptology, not only from the region, but from around the globe.
Included in your AOEC 2014 is the Epilepsy & Society Symposium. What is it about?
The Epilepsy & Society Symposium specifically targets individuals living with epilepsy, their families and the staff from community organisations supporting people living with epilepsy. It is also of interest to nurses, social workers, other health professionals and educators. The programme covers topics of everyday interest for people with epilepsy such as employment, schooling and sports and offers practical advice on anticonvulsants and alternative therapies to treat epilepsy.
An innovation to the programme for this year is a mini-fair where delegates have the opportunity to get hands-on information on first aid, exercise and academic performance etc but most importantly it gives people the chance to network with their friends and acquaintances from Asia and Australia.
For those who cannot come to Singapore from 7 to 10 August, can they follow AOEC remotely?
No, unfortunately not. The possibility of remote coverage of the AOECs and indeed the other regional and the international congresses of IBE and the International League Against Epilepsy (ILAE) is currently being explored. Both IBE and ILAE do provide excellent reports of the AOECs on their websites after the congress however – w w w. ibe-epilepsy. org and w w w. ilae. org.
Why did you choose Singapore as destination?
One of the primary attractions of Singapore was its central location in Asia and its excellent infrastructure. All of our delegates can fly into Singapore easily and often with a choice of airlines to choose from and then once in Singapore it is only a short trip to the congress venue. In addition, the Singapore Tourism Board (STB) offered an outstanding level of commitment in all of our pre-planning stages which clearly demonstrates why Singapore is an internationally-recognised MICE venue.
The IBE and ILAE actually held an International Epilepsy Congress (IEC) in Singapore in 2007 so we had direct experience of how professional all of the suppliers are here and thankfully that has not changed seven years later even though the skyline of Singapore has!
What are the main challenges for the International Bureau for Epilepsy (IBE) today?
It is only possible to educate the mind when it is open. Education is key to improving the social condition of people with epilepsy. Until people know the true facts about epilepsy, stigma and discrimination will continue to be major issues affecting both people with epilepsy and their families – from education to employment and social inclusion.
With the global financial downturn, NGOs around the world have experienced a decline in the support they receive to continue with their services. Epilepsy is no different. Finding financial means to support new initiatives is a challenge but it is a challenge we must meet if we are to continue to provide services through our 132 member associations based in 100 countries around the world.
Founded in Rome in 1961, the International Bureau for Epilepsy (IBE) is the international umbrella body for national epilepsy associations whose goal is to improve the quality of life of all people with epilepsy and those who care for them. The IBE is an incorporated, not-for-profit, international organisation. Its 10th Asian & Oceanian Epilepsy Congress (AOEC) will take place from 7 to 10 August 2014 in Singapore. w w w. ibe-epilepsy. org, w w w. epilepsysingapore2014. org