Fact Sheet N°166
Revised February 2001
EPILEPSY: SOCIAL CONSEQUENCES AND
Fear, misunderstanding and the resulting social stigma and
discrimination surrounding epilepsy often force people with this disorder
"into the shadows". The social effects may vary from country to
country and culture to culture, but it is clear that all over the world the
social consequences of epilepsy are often more difficult to overcome than the
Significant problems are often experienced by people with
epilepsy in the areas of personal relationships and, sometimes, legislation.
These problems may in turn undermine the treatment of epilepsy.
Misunderstanding and Social Stigma
Some examples of misunderstandings about epilepsy from around
- In Cameroon it is believed that people with epilepsy are inhabited by the
devil. This does not mean that they are seen as evil, but that evil invades
them and causes them to convulse from time to time.
- In China, epilepsy diminishes the prospect of marriage, especially for
women. A survey of public awareness in 1992 revealed that 72% of parents
objected to their children marrying someone with epilepsy.
- In some rural areas of India, attempts are made to exorcise evil spirits
from people with epilepsy by tying them to trees, beating them, cutting a
portion of hair from their head, squeezing lemon and other juices onto their
head and starving them.
- In Indonesia, epilepsy is often considered as a punishment from unknown
- In Liberia, as in other African countries, the cause of epilepsy is
perceived as related to witchcraft or evil spirits.
- In Nepal, epilepsy is associated with weakness, possession by an evil
spirit or the reflection of a red colour. Bystanders who witness a seizure
will often spray water on the forehead of the person experiencing the
seizure of make him or her smell a leather shoe.
- In the Netherlands in 1996, a person was whipped and put into isolation
because her seizures were thought to result from magic.
- In Swaziland, many traditional healers mention sorcery as the cause of
- In Uganda, as in many other countries, epilepsy is thought to be
contagious and so people with epilepsy are not allowed to join the communal
foodpot for fear of others contracting epilepsy through that person’s
In many countries legislation affecting people with epilepsy
has reflected centuries of suspicion and misunderstanding about epilepsy. For
example, people with epilepsy are often prevented from marrying or having
- In both China and India, epilepsy is commonly viewed as a reason for
prohibiting or annulling marriages.
- In the United Kingdom, a law forbidding people with epilepsy to marry was
repealed only in 1970.
- In the United States of America (USA), many individual States
prohibited people with epilepsy from marrying. The last State to repeal this
law did so in 1980.
- In the In the United States of America (USA), 18 States provided
eugenic sterilisation of people with epilepsy until 1956. Until the 1970s,
it was also legal to deny people with seizures access to restaurants,
theatres, recreational centres and other public buildings.
Unemployment and underemployment exist worldwide, but more so
with people with epilepsy. The misunderstandings and stigma mentioned previously
are usually to blame for this. For instance:
- A survey in China showed that 31% of respondents believed that people with
epilepsy should not be employed.
- Data from Germany, Italy and USA indicate that people with epilepsy of
working age, 40%-60% are employed (although these jobs are often below their
potential), 15%-20% are unemployed and about 20% retire early.
- In rural areas of India, people with epilepsy are generally looked after
by their families and they usually help with their family’s trade,
although this will be with fewer responsibilities and less strenuous roles
than "normal" people.
- In a recent research survey, nearly a quarter of Nepalese people with
epilepsy took the view that they were unable to work. As in many countries,
these people with epilepsy had been culturally conditioned to underrate
Misunderstandings about epilepsy, combined with the economic
and financial barriers to availability of treatment in developing countries,
play an important role in preventing treatment becoming available to millions of
people in developing countries. For example, culturally informed health-seeking
strategies often lead the majority of people with epilepsy in developing
countries to turn to traditional healers for treatment.
- In 1990, WHO, identified that, on average, the cost of the anti-epileptic
drug phenobarbitone (which alone could be used to control seizures in
a substantial proportion of those with epilepsy and which is on the WHO list
of essential drugs) could be as low as US$ 5 per person per annum.
- 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 affects young people in the most productive years of their
lives, often leading to avoidable unemployment.
- The cost and burden of epilepsy varies between countries.
- The anti-epileptic drug phenobarbitone can cost as little as US
$5/person/annum and can be used to treat many people with epilepsy.
- People with epilepsy continually face social stigma and exclusion. A
fundamental part of ridding the world of this stigma is to raise public and
- Legislation which reinforces fear and discrimination must also be changed.
For further information, please contact the Office of the
Spokesperson, WHO, Geneva. Tel: (+41 22) 791 2599. Fax: (+41 22) 791 4858.
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.int/