The scarlet E

In the 21st Century epilepsy remains a stigma & burden

Epilepsy is the most common serious neurological condition, which affects between 5 and 10 per thousand persons in the community. It is estimated that over 50 million people worldwide suffer from epilepsy and that 5 million of them live in India. Thanks to the many developments in medical science, epilepsy is today, eminently treatable. A number of anti-epileptic drugs are available, which have the ability to suppress and control seizures. Certain forms of epilepsy respond well to brain and nerve stimulation procedures and to surgery. When access to the best treatments is available, about two thirds of people with epilepsy either stop having seizures, or have a considerable reduction in their seizures. However, the vast majority of people with epilepsy, experience in countries like India, barriers to healthcare, failing the “Five A Healthcare Test" of availability, accessibility, affordability, acceptability and accountability. It has thus been estimated that over 90% of people with epilepsy in developing nations like India experience a “treatment gap”!

 Epilepsy is also a distressing and stigmatized disorder. In a critical assessment of how epilepsy (The Scarlet E) is presented in the language media, published in the scientific journal Neurology (2000), Krauss and colleagues showed that of 210 media stories published between 1991 and 1996, nearly one-third contained inaccuracies. These included wrong information about epilepsy (14%), unrealistic expectations about new treatments (9%), and exaggeration of the risks associated with seizures (5%). It has been pointed out that this may only be the tip of the "iceberg of ignorance" and that it draws attention also, to the emerging role of the internet, in spreading misinformation about epilepsy. With such a widespread background of stigma, ignorance and social disadvantage, it is hardly surprising that many people with epilepsy are rendered disabled; this is despite the eminently treatable nature of this disorder. 

The tendency to have recurrent seizures that often strike without warning in the most inopportune moments; in school or in the workplace, while attending a social function, a job interview, crossing the road, boarding a train and so on, does understandably impose many restrictions on the person thus affected. A range of associated circumstances that disadvantage people with epilepsy include problems with obtaining and retaining work opportunities and social relationships because of their health condition; secondary psychological factors like depression that follow its persistent adversity; and, perhaps most important, the tendency in society to stigmatize the person with epilepsy, withholding from the affected person opportunities they would normally have enjoyed. The emphasis in epilepsy care, has therefore, in line with the World Health Organization's (WHO) bio-psycho-social model of health, moved to include role functioning across several life domains; going far beyond the seizure episode and medical condition; incorporating educational, occupational, psychological, family and marital functioning, and health related quality of life.

There are a number of aspects to epilepsy that render it disabling; interestingly, many of these are not paid attention to in the conventional clinical management process. First, the fear of seizures results in a restriction (often family or self-imposed) in physical and social activity right through the lifespan, resulting in the denial of a range of opportunity. Second, embarrassment and perceived stigma due to seizures, result in restriction of social, occupational and vocational functioning (often family or self imposed) as appropriate for age and social station. Third, these and other factors result in poor educational and occupational attainment across the lifespan and thus significantly diminished achievement for the person with disability. Here, educational institutions may contribute to the limitation, the fear of epilepsy preventing their engagement with young epilepsy sufferers. Children and adolescents with epilepsy often are asked to leave school due to their recurrent seizures, an act that does not have any justification. Fourth, diminished social achievement and limited peer group interactions often lower potential for marriage, and impact on normal family life and relationships. Both young people with epilepsy and their families go through many anxious moments, in their search for "a suitable spouse". Last, but not least, the considerable financial burden of epilepsy casts its shadow on the person and the family. Anti-epileptic drugs are expensive, especially the newer ones, and in combination can cost about Rs. 100 per day. Other treatments for epilepsy like brain stimulation and surgery are often beyond the reach of the common man. These factors make epilepsy an invisible disability; a condition in which an apparently normal person is rendered disabled, not only by unpredictable recurrent seizures, but also their stigma and psychosocial impact.

Epilepsy exemplifies the challenge of living with chronic disease. On the one hand people in India are profoundly concerned about illness in a member of their community and very conscious of their need for care and support. On the other hand, this high level of concern combined with very closely knit communities, does lead to a lack of privacy about personal medical information and can contribute to the stigma of conditions like epilepsy. To add to this, there is rampant misinformation about epilepsy and other such disorders that remain closely linked in social consciousness with the gods, demons and spirits; to which the popular media contributes, in no small measure. While stigma about illness is almost as old as humankind and is likely to remain, it can as the epilepsy story shows, become a barrier, not only to appropriate medical management, but also to personal and social achievement across the lifespan. In reality, apart from driving a motorized vehicle and taking part in some risky forms of adventure sport, there are very few activities that a person with epilepsy cannot do; they can engage in most forms of education and trade; get married, beget children and have normal family lives, like everyone else. Yet, stigma and misinformation result in most people with epilepsy, underachieving, often the barriers to achievement being within their own family, or indeed themselves.

Epilepsy should remind us about the need for greater focus as a society on the psychosocial impact of all chronic disease. Casting our nets wider, we do find that the burden of stigma and psychosocial disability extends far beyond epilepsy; to diabetes, depression and other psychiatric disorders, cancer, renal failure, indeed the gamut of chronic diseases that afflict humankind. Perhaps its time both the medical profession and our policy makers paid attention to "the scarlet letters" of the 21st Century.

Ennapadam S. Krishnamoorthy

Neuropsychiatrist & Entrepreneur

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