HEALTH: WHO Lashes Out Against Epilepsy, the ‘Secret’ Disease

By Gustavo Capdevila Reprint | | Print |

Gustavo Capdevila

GENEVA, Feb 13 2001 (IPS) - Health practitioners in four developing countries will be trained in the diagnosis and treatment of epilepsy as part of an international campaign led by the World Health Organisation (WHO).

While some 50 million people suffer the neurological disorder worldwide, less than 20 percent receive treatment, and the lion’s share of those who receive medical care are in industrialised countries.

Around two million new cases are reported annually, and 85 percent of epileptics live in the developing world.

The Global Campaign against Epilepsy, spearheaded by the WHO and two non-governmental organisations (NGOs), the International League against Epilepsy and the International Office for Epilepsy, is being implemented under the slogan “Out of the Shadows”, and is now entering its second phase.

Epilepsy is still stigmatised in many parts of the world, and epileptics and even their families and others close to them often face discrimination in the community, and at the workplace, school and home.

The first stage of the campaign, which was launched in 1997, focused on consciousness-raising information and educational efforts.

The activities involved in the second phase will be carried out in Argentina, China, Senegal and Zimbabwe.

WHO Director-General Gro Harlem Brundtland said “our aim is to improve treatment, prevention and social acceptance of epilepsy, the world’s most comon – yet treatable – brain disorder.”

Since the first phase of the campaign got underway, more people have begun to come out of the shadows to talk about their problems, Carol D’Souza, a nurse with the Mumbai (formerly Bombay) chapter of the Indian Epilepsy Association told a news conference in Geneva.

D’Souza experienced the first symptoms of epilepsy at age 11, and was instructed by her family to keep her condition a secret. She closely guarded her secret for years, even while she worked as a secretary, and only broke her silence after she was married. Until that time, she never received treatment.

“Our biggest challenge is to de-mystify epilepsy, to make people understand that there is nothing supernatural about it,” said Derek Yach, WHO Executive Director in charge of Mental Health.

The campaign is aimed at convincing governments that epilepsy is treatable, and that the treatment is affordable – just one or two dollars a month per patient, said Hanneke de Boer, president of the Global Campaign against Epilepsy.

De Boer admitted that even that figure was high for some countries. However, a visit to a local healer is much more expensive than the cost of medical treatment, she underlined.

The programme to be implemented in Argentina, China, Senegal and Zimbabwe will entail an initial assessment of the number of people with epilepsy, and the training of physicians, nurses and personnel working with NGOs in diagnostic and treatment methods.

A report by the Pan-American Health Organisation (PAHO), the WHO’s regional branch in the Americas, said 3.5 million of the region’s 5.0 million epileptics received no treatment. Furthermore, none of the 30 countries of Latin America and the Caribbean have a national policy on epilepsy.

In sub-Saharan Africa, meanwhile, there is just one neurologist for every four million people, according to the WHO.

The Global Campaign against Epilepsy will cost around 4.6 million dollars, around seven percent – less than 300,000 dollars – of which will go towards covering the expenses of the secretariat. The rest will be earmarked for work in the field.

The WHO pointed out that the physical, psychological and social repercussions of epilepsy are profound. Children with epilepsy tend to receive less schooling, while unemployment is generally two to three times higher among epileptics.

The most widespread characteristic shared by epileptics is the tendency to hide their disease. Epilepsy often leads to social isolation, low self-esteem, depression and suicide, the WHO reported.

While some people are more susceptible to epilepsy, the disorder is usually triggered by an illness or brain trauma, infections like meningitis or encephalitis, cardiovascular ailments, tumours or alcohol abuse.

In developing countries, preventable parasite-borne diseases, malnutrition, or inadequate medical care at the time of birth are among the most common causes of the disorder.