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Report: 80 percent of epileptics go untreated

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February 14, 2001 

GENEVA--(AP) - Up to 80 percent of epileptics are not receiving the treatment that could allow them to lead a normal life, the World Health Organization said Monday.

"Still too many people suffering from epilepsy are stigmatized and discriminated against, and still too many people with epilepsy are not receiving treatment," said Benedetto Saraceno, WHO's director of mental health.

The U.N. health agency announced a pilot project in four developing countries - China, Argentina, Senegal and Zimbabwe -to give doctors and health workers special training in the diagnosis and treatment of epilepsy.

The project, which will costs dlrs 4.6 million over four years, will also survey the number of people suffering from epilepsy and look at ways to reduce the number of people suffering from the condition.

"We are aiming to demonstrate that epilepsy care can be provided even in areas with no resources," said Ley Sanders, scientific coordinator of the project which also involves two international epilepsy organizations.

If the program is successful, he said, it should also bring economic benefits to the countries. At the moment, many epileptics are unable to work and their hospitalization is a burden on health care systems.

Epilepsy is a neurological disorder which occurs in every country of the world. Symptoms range from minor lapses of attention to severe and prolonged convulsions and loss of consciousness. Many cases are caused by an underlying brain disease or injury, but children often develop the condition with no obvious cause.

WHO estimates that 40-50 million people worldwide suffer from epilepsy. Three-quarters could lead a normal life if they took anti-epileptic drugs costing dlrs 10-12 per year. Based on global production of the drugs, WHO believes that 80 percent of people go untreated.

Many people are not treated because of the stigma associated with the condition, WHO says. In some countries, people with epilepsy are believed to be possessed by the devil, and in others epileptics are not allowed to join in with communal activities because the condition is believed to be infectious.

Parents often object to their children marrying epileptics, and a law banning epileptics from marrying was only revoked in Britain in 1970.

Carol D'Souza, of the Indian Epilepsy Association, said the stigma had forced her to hide her illness when she was diagnosed at age 11.

"I was told to keep it a secret, a secret which I didn't share even with my closest friends. I had a number of jobs as a secretary but I never mentioned that I had epilepsy. I was lucky and was never found out," she said.