Besides being all high achievers, what do Vincent van Gogh, Julius Caesar, Dostoyevsky, Vladimir Lenin, Joan of Arc, Socrates, Alexander the Great, Alfred Nobel, Napoleon and Lord Byron have in common? Well, they all had epilepsy a disorder they have in common with 50 million people in the world, some 35 million of whom have no access to appropriate treatment. This is either because services are non-existent or because epilepsy is not viewed as a medical problem or a treatable brain disorder. In a country like India, the social stigma attached to the disorder makes it more challenging than the physical disability caused by it yet there is no national level policy commitment towards fighting epilepsy.
According to World Health Organisation (WHO), "Epilepsy is also one of the oldest conditions known to mankind. It is characterized by a tendency to recurrent seizures and is defined by two or more unprovoked seizures...Seizures may vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. They may also vary in frequency, from less than one a year to several per day".
As WHO defines it, an 'epileptic seizure' is the result of transient dysfunction of part or all of the brain due to excessive discharge of a hyper-excitable population of neurons, causing sudden and transitory phenomena of motor, sensory, automatic or psychic nature.
Studies suggest the prevalence (proportion of a population with that disorder at a given point in time) of epilepsy to be roughly 1% in developing countries. By this estimate, in India alone there are roughly 10 million people suffering from epilepsy at any given point of time just about the populations of Switzerland and Lithuania put together. By contrast, the prevalence of epilepsy in western nations is roughly 0.5%. One of the main reasons for the higher incidence of epilepsy in developing countries is the higher risk of experiencing a condition which can lead to permanent brain damage. These conditions include neurocysticercosis, meningitis, malaria, pre and peri-natal complications, malnutrition and brain injuries.
According to Dr. Satish Jain, former Professor of Neurology at All India Institute of Medical Sciences (AIIMS), New Delhi and present Head of Neurology, FORTIS Hospitals, "for many patients, the causes of epilepsy cannot, as yet, be identified. In such cases, the theory most commonly accepted is that their epilepsy is the result of an imbalance of certain chemicals in the brain especially chemical messengers known as neurotransmitters causing them to have a low convulsive threshold."
Epilepsy causes
Children and adolescents are more likely to have epilepsy of unknown or genetic origin. The older the patient, the more likely it is that the cause is an underlying brain disease, such as a brain tumour or cerebrovascular disease or a degenerative brain disorder.
Trauma and brain infection can cause epilepsy at any age, and may account for a higher incidence of epilepsy in developing countries. For example, a common cause in Latin America is neurocysticercosis cysts on the brain caused by tapeworm infestation, while in Africa, malaria and meningitis are common causes, and in India neurocysticercosis and tuberculosis often lead to epilepsy.
Febrile illness of any kind can trigger seizures in young children. According to WHO estimates, about 3% of all children can have febrile convulsions, but only a small percentage of them go on to develop epilepsy later in life.
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Cerebrovascular: refers to conditions of the brain that are secondary to abnormalities in the blood supply/circulation.
Neurocysticercosis cysts: are larval forms of tape worm infestation and are usually not seen in humans. Human beings harber these cysts accidentally. The adult tape worm lies in the human intestines.
Febrile illness: denotes any illness that has fever.
Unfortunately, all over the world, the social consequences of epilepsy are often more difficult to overcome than the seizures themselves more so in developing countries. In some rural areas of India, for instance, 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.
However, fear, misconceptions and stigma are associated with this disorder not just in developing countries. In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970. In the USA, many individual States prohibited people with epilepsy from marrying. The last State to repeal this law did so in 1980.
Basic concepts surrounding epilepsy in ancient Indian medicine were refined and developed during the Vedic period of 4500-1500 BC. In the Ayurvedic literature of Charaka Samhita (which has been dated to 400 BC and is the oldest existing description of the complete Ayurvedic medical system), epilepsy is described as "apasmara" which means 'loss of consciousness'.
Another ancient and detailed account of epilepsy is on a Babylonian tablet in the British Museum in London. This is a chapter from a Babylonian textbook of medicine comprising 40 tablets dating as far back as 2000 BC. The tablet accurately records many of the different seizure types which are recognized today. In contrast to the Ayurvedic medicine of Charaka Samhita, however, it emphasizes the supernatural nature of epilepsy, with each seizure type associated with the name of a spirit or god - usually evil. Treatment was, therefore, largely a spiritual matter.
According to WHO, the perception that epilepsy was a brain disorder did not begin to take root until the 18th and 19th century. The intervening 2,000 years were dominated by more supernatural views. In Europe, for example, St Valentine has been the patron saint of people with epilepsy since medieval times. Sites where St Valentine was thought to have lived or visited became pilgrimage destinations to get cured. These sites included Rome and Terni (where St Valentine was Bishop) in Italy, Ruffach in France (where a hospital for epilepsy was later built), Poppel in Belgium, and Passau in Germany.
The World Bank report "Investing in Health" (1993) states that in 1990 epilepsy accounted for nearly 1% of the world's disease burden. This is partly attributable to the fact that epilepsy commonly affects young people in the most productive years of their lives, often leading to avoidable unemployment.
Misunderstandings about epilepsy and economic barriers play an important role in keeping treatment out of reach of millions of people in developing countries. For example, culturally oriented health-seeking strategies often lead the majority of people with epilepsy in developing countries to turn to traditional healers and quacks for treatment.
A glaring example was the Neeraj Clinic case at Rishikesh that promised complete cure of epilepsy. "Doctor" R.K. Gupta, the owner of Neeraj Clinic was arrested in 2004. He had been duping lakhs of epilepsy patients by using a high narcotic and psychotropic content in his ultra-expensive, 'miraculous cure'. Gupta claimed to get the 'siddha' medicine from the Himalayas in the wee hours of the morning but was reportedly using allopathic pills bought from local companies.
Police seized a very large stock of illicit drugs from his clinic and booked him under the Narcotic Drugs and Psychotropic Substances (NDPS) Act and violation of the Licence Act, apart from Section 420, IPC. For the last many years Gupta had managed to place front-page ads in national newspapers but is finally facing criminal prosecution.
This sounds ironic when one considers that the WHO estimated in 1990 that the average cost of the anti-epileptic drug Phenobarbitone could be as low as US$ 5 per person per annum (Rs 210 at current exchange rates). This drug is on the WHO list of essential drugs and could alone be used to control seizures in a substantial proportion of those with epilepsy.
The WHO also reminds us of the most crucial points concerning epilepsy:
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Epilepsy is one of the most common neurological disorders and has no age, racial, social, sexual or geographical boundaries.
Up to 5% of people in the world may have at least one seizure in their lives.
At any one point in time, 50 million people have epilepsy, especially in childhood, adolescence and old age.
Epilepsy can have profound social, physical and psychological consequences.
In up to 70% of people, epilepsy responds to treatment, but in developing countries, three-fourths of people with epilepsy may not receive the treatment they need.
In 1997 the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) joined forces with the World Health Organization to establish the Global Campaign Against Epilepsy to "bring epilepsy 'Out of the Shadows'". The campaign aimed at improving the diagnosis, treatment, prevention and social acceptability of the disorder world-wide, says their group's 2000 annual report.
However, national policy commitment towards better management of epilepsy is still lacking in India. According to Dr. Satish Jain, "just like the Polio Eradication Programme, a nation-wide Epilepsy Control Prorgamme should be initiated." The most crucial aspect of epilepsy is the social stigma which is worse than the stigma attached to many other disorders.
Dr. Jain maintains that school teachers often do not know how to deal with children with epilepsy; employers are skeptical and of course marriage in our society becomes a great challenge. There is sheer lack of awareness which makes the disorder so much more cumbersome than it is. Moreover, polio for instance affects only once in a lifetime causing permanent disability. Epilepsy may also stay with someone forever but seizures can occur anywhere anytime which only underlines the need to develop a national level policy commitment to address patients' vulnerability.
Indeed, epilepsy is a sad instance of how society often makes disorders much more painful than does pathology. Both the disorder and the outlook towards patients need to be addressed with equal urgency. Epilepsy treatment needs to be encouraged and made more widely available. Schools, employers, families and society at large need to be sensitized perhaps more about what epilepsy is not but is often made out to be.
