Ann
Jacoby, Ph.D.
Epilepsy is the world’s most common serious
neurological disorder, affecting some 50 million persons worldwide. Over four-fifths of the world’s population
of people with epilepsy live in the developing world. Differences in understanding of the causes and nature of epilepsy
and in its treatment result in the meaning of epilepsy being somewhat different
for people living in the developing than in the developed countries. In the latter, epilepsy is recognised as a
group of disorders of the brain in which seizures occur as a result of
anatomical, metabolic or physiological abnormalities. In the former, ideas of epilepsy as the product of witchcraft and
demonic possession are still commonplace, as are ideas of epilepsy as
contagion. These different aetiological
realities have profound effects on the social realities of those thus
affected. In the developed world, up to
95% of people with epilepsy will be treated with AEDs, whereas in the developing
world, it is estimated that up to 90% do not receive any biomedical
treatment. As a result of this
treatment gap, many people with epilepsy in the developing world will continue
to experience seizures, despite evidence from studies in the developed world
that around 70% of those appropriately treated with antiepileptic therapy will
quickly be rendered seizure-free.
In the developed world, legislation protects the
rights of individuals with epilepsy and the epilepsy patient organisations
campaign to protect their interests. In
contrast, the continuing stigma of epilepsy in the developing world means that
people with the condition face significantly greater barriers than their
developed-world counterparts in relation to a whole range of aspects of
everyday life.
Sociological theory of stigma suggests a number of elements around which we can characterise the differing social realities of people with epilepsy in the developing and developed world. In the developed world, high levels of seizure control mean that epilepsy can most often be characterised as, in Goffman’s terms, a ‘discreditable’ condition, with the key issue one of information management. In the developing countries, where effective treatment is scarce and consequently seizures are often poorly controlled, epilepsy comes closer to the concept of a discrediting condition, where the issue is one of managing tension in social interactions. In the developed world, evidence suggests that the stigma of epilepsy may be more felt than enacted. Studies in the developing world suggest that there, the converse is likely to be the case. The concept of courtesy stigma – the tendency for stigma to spread from the labelled individual to his family – has been highlighted in studies in both developed and developing countries; though its management by those thus threatened may also vary. What studies in both developed and developing countries show is that in both, epilepsy is a moral as well as a pathological condition.
Epidemiological studies of epilepsy in the
developing world currently emphasise the importance of focussing on reduction
of rates of infections that cause epilepsy and of closing the gap in treatment
that influences its clinical prognosis.
What the few relevant studies that have been undertaken point to is that
education and rehabilitation programmes are also vital, to address public
attitudes and misconceptions about the condition, as well as those held by
people with epilepsy themselves. This
should not come as any surprise if we follow the history of the stigma of
epilepsy in the developed world. Though such programmes, it should be possible
to begin to redefine the social status of epilepsy as well as its position as a
public health priority.