4 May 2000
"OUT OF THE SHADOWS"
BRINGING EPILEPSY OUT OF THE SHADOWS IN AFRICA
Ill-informed Attitudes Prevent up to 80% of Africans Suffering From Epilepsy From Being Treated, Says WHO
Dakar, Senegal. An estimated 3-4 million Africans, who are affected by epilepsy and suffer from social and cultural stigmas attached to it, will benefit from "Out of the Shadows — A Global Campaign Against Epilepsy", which saw its regional media launch for Africa here today.
The campaign was initiated by the World Health Organization (WHO) and two nongovernmental organizations (NGOs): the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Both NGOs operate worldwide – ILAE representing doctors and scientists and IBE acting for patients and their families.
Out of the Shadows is aimed at improving health care services, treatment and social acceptance of epilepsy as a serious, yet treatable, brain disorder. Raising public and professional awareness and dispelling myths about epilepsy was one of its key elements, especially in Africa, the organizers said.
"An estimated 70% of patients with epilepsy could leave normal lives if properly treated. The cost of the anti-epileptic drug phenobarbitone, which alone can control seizures in a substantial proportion of those with epilepsy, could be as low as US$5 per person per annum," commented Dr Ebrahim Malick Samba, WHO’s Regional Director for Africa, from Harare.
"Yet, in Africa, up to 80% of people suffering from epilepsy did not receive any treatment at all. In very many instances, the reasons for that are not only economic but rather social," he said.
According to the campaign organizers, myths and superstition surrounding epilepsy are to blame. In many African cultures, this brain disorder is associated with evil spirits. In Cameroon, for example, it is still believed that people with epilepsy are inhabited by the devil. They are not seen as evil themselves -- just that the devil invades them and causes them to convulse from time to time. In Liberia, as in many other parts of Africa, epilepsy is related to witchcraft or evil spirits. Most traditional healers in Swaziland mention sorcery as the cause of epilepsy -- an enemy sending spirits to invade the body and cause convulsions.
As a result of such misconceptions, the majority of Africans, who have seizures and need proper diagnosis and treatment, do not seek medical advice even when they can afford. Rather, they consult traditional healers, who cannot really help them either get rid of the disorder or control their seizures. Uncontrolled seizures make lives of these people miserable.
It is precisely for this reason that an accurate estimate of the number of Africans with epilepsy is difficult to arrive at. WHO stressed that the existing estimates of 3 to 4 million people with epilepsy in Africa were very conservative.
The organizers emphasized that the available evidence made it possible to suggest that Africans, like populations in other developing countries, suffered more from ill-informed attitudes and social stigma, than from epilepsy itself. At the same time, WHO admitted that as far as epilepsy was concerned, every region of the world was a "developing" region.
"Epilepsy can be treated. Epilepsy must be treated. From a medical point of view that is so obvious," stated Hanneke de Boer, Chairperson of the Executive Board of the ILAE/IBE/WHO Global Campaign against Epilepsy and an epilepsy patient herself. "To promote better services and treatment of epilepsy, we need to encourage patients and their families to step out of the shadows, on the one hand, and to create the conditions, in which they can seek medical help without fear of prejudice or penalty, on the other," she said.
"Out of the Shadows is part and parcel of the new global strategies of the World Health Organization in coping with the hidden and ever-increasing burden of mental illness," commented from Geneva Dr Derek Yach, WHO Executive Director responsible for this area. "Human rights of patients, including those with epilepsy, are at the core of our new strategies and WHO’s work in the field of mental and neurological disorders."
According to WHO’s "World Health Report 1997", more than 40 million people worldwide suffer from different types of epilepsy. Around 85% of these people live in developing countries. The World Bank report "Investing in Health" (1993) states that in 1990 epilepsy accounted for nearly 1% of the world's disease burden. Epilepsy commonly attacks young people in the most productive years of their lives, often leading to avoidable unemployment.
The media launch of Out of the Shadows in Africa was organized within the framework of the regional conference on epilepsy "Epilepsy: a Health Care Priority in Africa" that was held in Dakar, Senegal, 4-5 May 2000. The conference was cosponsored by WHO, ILAE and IBE. It adopted the African Declaration on Epilepsy, which proclaimed epilepsy a health priority in Africa and called for public health measures to improve its treatment and raise public and professional awareness that could counter ill-informed attitudes towards this brain disorder.
For further information in Geneva, please contact Igor Rozov, WHO, Tel. (4122) 791 2532, Fax (4122) 791 4858, mobile phone(4179) 217 34 93, e-mail firstname.lastname@example.org.
All WHO Press Releases, Fact Sheets and Features as well as other information on this subject can be obtained on Internet on the WHO home page http://www.who.ch/