Out of the Shadows
A Global Campaign is Launched
[The following press release (which may be found at the website of the Epilepsy Foundation of America,"http://www.efa.org/") concerns a worldwide attack on epilepsy. This global initiative has the endorsement of the Epilepsy Foundation of America. A member of the EFA board, Tony Coelho, participated in a general session on the global campaign at the International Epilepsy Congress in Dublin in July.
The material may be found at "http://www.efa.org/newsdesk/n072197.html."]
Geneva, Switzerland, June 19, 1997 — The hidden suffering of more than forty million people throughout the world, who are affected by epilepsy and have to live secret lives because of ill-informed public attitudes, was highlighted today when the World Health Organization (WHO) announced jointly with two nongovernmental organizations (NGOs) the start of "Out of the Shadows — A Global Campaign Against Epilepsy."
The two NGOs are the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Both ILAE and IBE operate worldwide - the League representing doctors and scientists and the Bureau acting for patients and their families.
"We call upon policy makers, lawyers, health professionals, international and national nongovernmental organizations, as well as donor organizations to join forces in promoting conditions for people with epilepsy to step Out of the Shadows of social stigma, and for this disorder to be drawn out from the under the shadow of public health priorities," declared WHO's Assistant Director-General, Dr. Fernando Antezana, at a press conference in Geneva.
According to the three organization, the campaign is aimed at improving health care services, treatment and social acceptance of epilepsy, the world's most common serious — yet treatable — brain disorder.
It is medically possible for up to 70% of people with epilepsy to have their condition brought under successful control. However, mainly for social reasons, three-quarters — or approximately 30 million — of those affected with the disorder do not receive any treatment at all, and these people are mostly in developing countries.
The global campaign will follow two parallel and simultaneous tracks: the raising of general awareness and understanding of epilepsy, and the rendering of assistance to Departments of Health in identifying needs and promoting education, training, services, research and prevention.
WHO, ILAE and IBE are establishing a common protocol for assessing epilepsy needs in a range of countries. Special target groups for raising awareness about epilepsy include local governments, the general public (including teachers), health professionals, people with epilepsy and their families.
"Out of the Shadows delivers a powerful message to people with epilepsy who feel isolated, misunderstood and neglected," stated ILAE President, Dr. Edward Reynolds. "Cancer, leprosy and epilepsy were the three great unmentionables until as recently as 30 years ago. Now cancer is more openly discussed while leprosy is less of a taboo, and we would like epilepsy to go that way. We have to make people aware that epilepsy is a universal brain disorder which responds to treatment. Scandalously, three out of four people in the world with epilepsy are not getting any treatment at all, mainly because of social reasons," said Dr. Reynolds.
In 1990, epilepsy accounted for nearly 1% of the world's disease burden, and is comparable in this respect to breast cancer in women, or lung cancer in men. Epilepsy commonly attacks young people in the most productive years of their lives, often leading to avoidable unemployment.
John Bowis, former United Kingdom Health Minister, said: "If nearly three-quarters of people with epilepsy can be treated it makes sense in humanitarian and economic terms to make an effort and face this challenge. One of the first steps in this direction is to create the conditions in which people with epilepsy can seek help without fear of prejudice or penalty, and begin to live normal lives.
