The Global Burden of Epilepsy

Epilepsy is a truly unique global burden affecting all ages, races, social classes and countries. As one of the world’s most common serious brain disorder, epilepsy affects at least some 50 million people worldwide. Epidemiological studies have shown that it is uniformly distributed around the world with only slight variations in prevalence influenced by local environmental factors such as trauma associated with wars, road traffic accidents or poor obstetric care; or brain infections associated with poverty, malnutrition and epidemics; or age related diseases in more developed countries.

Historically it can be traced to all ancient civilisations. For example, Babylonian descriptions of epileptic seizures in the second millennium BC are very similar to those we see today. Epilepsy imposes enormous physical, psychological, social and economic burdens on individuals, families, communities and countries, compounded by the misunderstanding, fear and stigma which has prevailed for millennia and is still widespread today. These problems are universal but are greatest in the developing world where 85% of people with active epilepsy live and of whom, three quarters received no adequate diagnosis or treatment, the so-called treatment gap. This is all the more regrettable as 70% of people with epilepsy could be seizure-free with relatively cheap treatment.

Birth of the Concept

As Presidents of ILAE and IBE Edward Reynolds and Hanneke de Boer attended their first two annual meetings of the Neurosciences NGO’s in association with the WHO, which were held in Geneva in December 1993 and 1994. It seemed that these were merely forums for the exchange of information but it occurred to Edward Reynolds and, almost simultaneously, to Dr Leonid Prilipko (WHO officer responsible for neurology and neuroscience) that the potential existed for a much more active and effective relationship between the NGO’s and WHO. A first meeting on this subject took place in Geneva on January 16th 1996. From ILAE were involved Dr Reynolds and Dr Pierre Jallon, chair of the ILAE Commission on Developing Countries; from WHO, Dr Prilipko and Professor Costa e Silva (Director of the WHO Cluster on Mental Health) and Professor Shichuo Li (Assistant Director General of WHO and Chairman of the Executive Board). There was a considerable meeting of minds that day in which the concept of the ILAE/IBE/WHO Global Campaign Against Epilepsy was born.

In June 1996 the ILAE Commission on Developing Countries arranged a two day Workshop in Geneva with experts from ILAE, IBE and WHO and representatives from every continent. Epidemiological, medical, social and economic aspects of epilepsy in developing countries were reviewed as a platform on which to build the Campaign. Both the League and Bureau then agreed that the potential benefits of the Campaign for people with epilepsy everywhere outweighed the potential challenges and risks of the Campaign, which was then formally announced at the ILAE European Congress in The Hague, the Netherlands and at the ILAE and IBE Asian and Oceanic Congresses in Seoul, South Korea, in September 1996.

Launch of the Campaign

The first phase of the ILAE/IBE/WHO Campaign was formally launched in the presence of the WHO, League and Bureau leadership in Geneva on June 19th 1997 and again two weeks later on July 3rd 1997 in Dublin at the 22nd ILAE/IBE International Epilepsy Congress in the presence of the Irish President, Mary Robinson, later UN Commissioner for Human Rights; John Bowis MBE, former UK Minister of Health and Member of the European Parliament (MEP); Tony Coelho, former US Congressman, who has epilepsy; Mary Banotti, Irish MEP; Joe Doyle, Irish Senator and then Lord Mayor of Dublin, who also had epilepsy.