Dealing with epilepsy

Published : Oct 14, 2000 00:00 IST

An international workshop on epilepsy in Chennai calls for evolving simple standardised treatment models that are accessible to all patients.

ONE in every 100 persons in India suffers from epilepsy, but the majority of the affected people remain untreated. That there is an urgent need to work out basic standards of treatment for epilepsy that is accessible to all was the consensus among over 2 50 scientists, medical practitioners, psychologists, psychiatrists, health workers and medical students who gathered in Chennai in early September to discuss cross-cultural issues related to epilepsy. The Indo-British workshop was conducted under the aeg is of the International League Against Epilepsy - Commission on Developing Nations, hosted by the Chennai-based T.S. Srinivasan Department of Clinical Neurology and Research.

The ten scientific sessions included epidemiology (the dynamics of epilepsy in the population), primary care, the genetic basis of epilepsy, specific clinical syndromes, medical management, living with epilepsy, research priorities for developing countri es and emerging trends in investigation and treatment.

Epilepsy is a common neurological disorder with a global-level incidence of one in every 200 people. It was first recognised as an organic process of the brain by Hippocrates (460-377 B.C.). The first surgical procedure for epilepsy was performed in the United Kingdom some 120 years ago. The procedure was to drill a hole in the brain to drain phlegm, then thought to cause epilepsy. The National Society of Epilepsy was set up in the U.K. in the 1890s and the first drug was developed in Germany in 1912. D espite all the medical advancement, more than 80 per cent of the epilepsy patients in developing countries remain untreated. This is because, apart from the lack of awareness and poor accessibility and affordability of treatment, there are numerous forms of epilepsy, each caused by hundreds of different factors. Epilepsy affects different people in different ways.

The brain is a highly complex structure composed of millions of nerve cells (neurons). Their activity is usually well organised with mechanisms for self-regulation. The neurons are responsible for a range of functions, including consciousness and bodily functions and postures. A sudden temporary interruption in some or all of these functions is called a "seizure". This can be caused because of some disturbances in the brain or, rarely, because of external factors such as a temporary stoppage in the supp ly of oxygen or glucose to the brain. Many people experience a single episode of seizure in their lives. This is not epilepsy. Only repeated seizures due to disturbances in the neuronal function of the brain can be called epilepsy.

There are numerous types of epileptic seizures. They are classified on the basis of age of onset, duration, degree of loss of consciousness, pattern of seizure and brain focus. Some children have generalised convulsions when there is a sudden rise in bod y temperature. This is called febrile convulsion, and is not an epileptic seizure. Also, not all seizures involve convulsions.

Broadly, seizures are classified into generalised seizures (formerly known as grand mal), including tonic (stiffening of muscles without rhythmic jerks), atonic (sudden loss of muscle tone) and myoclonic (abrupt jerking of limbs) convulsions, causing the affected person to fall; petit mal attacks, believed to cause loss of consciousness lasting only a few seconds, without any other signs; focal or partial seizures, which affect distinct areas of the brain leading to motor seizures, sensory attacks, psyc homotor seizures and other localisation attacks; and complex partial seizures, in which consciousness is affected causing semi-purposive movements such as fiddling with clothes, wandering about aimlessly and being generally confused.

The two broad types of epilepsy, Idiopathic and Symptomatic, produce hundreds of types of seizures. In Idiopathic epilepsy there is no environmental cause, and it is presumed that genetic factors predominate. Symptomatic epilepsy, which is usually the re sult of some structural abnormality in the brain, is either present at birth or occurrs later. Congenital problems can also cause epilepsy. Some people suffer from cryptogenic epilepsy, for which no cause has been found. All parts of the cortical grey ma tter of the brain can be affected during seizures. In 30 to 40 per cent of the patients, the whole brain is affected.

Epilepsy can affect anyone at any age, in any race or social class. Usually, seizures tend to start either in infancy, by late adolescence, or after 65. The majority of patients with epilepsy are infants below one year, or in the over-60 age group. There are 40 to 50 million epilepsy patients world over. While the prevalence is said to be about 1 per cent in India, it is about 0.5 per cent in the U.K. The incidence in developed countries is 50 per 100,000 people a year, while it is 120 per 100,000 peop le in developing nations. In terms of a single seizure, the rate of incidence is the same in developing and developed countries, 20 to 30 per 100,000 people.

According to Prof. William Harkness, a senior neurosurgeon at National Hospital, London, the most common causes for the disorder are head injury, brain infections, encephalitis, meningitis, abscess and dementia. It can also be triggered by the consumptio n of alcohol (25 units a week) and recreational drugs such as heroin and cocaine. Environmental and socio-economic conditions may cause epilepsy. For instance, in developing countries poor sanitation, poor pre- and post-natal care and malnutrition may be the cause. Those genetically susceptible to epilepsy run a greater risk in situations influenced by any of these factors. Says Prof. Harkness: "It is important to know if a person has epilepsy, but more important is to ascertain the cause."

For instance, the most common cause of epilepsy in India is the consumption of food contaminated with eggs of tapeworm, the larvae of which get into the blood stream after hatching. Similarly, there are types of epilepsy that are common to some or all de veloping countries. For instance, while epilepsy as a result of malarial and tubercular infections is common in developing countries, 'hot water epilepsy', caused by the bathing practice of pouring hot water on the head using a mug, is peculiar to South India.

According to Prof. J.W.A.S. Sander, Professor of Clinical Neurology at National Hospital, London (who delivered the third E.S. Krishnamoorthy Endowment Lecture at the workshop), a rare type of epilepsy caused by some genetic factors is found in a particu lar Jewish community. With active counselling, its incidence has been reduced.

Prof. Sander, who specialises in epidemiology and the pharmacological treatment of epilepsy, the measurement of treatment outcome, pharmaco-economics and genetics, said that there were some forms of epilepsy that were specific to certain places, such as schistosomiasis in Africa and trypanosomiasis in America, and that it was important to identify them and determine their cause.

He told Frontline that not all cases of epilepsy were explained by genetic factors. "At the same time, though not everyone with a head injury suffers from seizures, those with a family history of epilepsy are likely to get them. Genetic factors in crease the risk. But we have not yet understood fully the role of genetic factors in epilepsy."

Prof. Sander said that epilepsy is common among children and those above 60. Among children it is invariably caused by congenital problems, when they are born with abnormal brain development. Febrile convulsions affect 3 to 5 per cent of children. They damage the part of the brain called hippocampus. This is treatable. Among the elderly, the most common cause is tumours in the brain, as also cerebrovascular disease, or silent stroke.

According to him, there are some preventable forms of epilepsy, the most common one being neurocysticercosis - prevalent in western India, parts of Africa and South America. This is caused mainly by poor sanitation and contamination from human faeces, an d malaria. "In the developing countries many epilepsy cases are caused during child birth, owing to the absence of peri-natal care, which is easily remedied. Corti-malformation in the brain can cause epilepsy - the most common forms are when the brain ha s blemishes and moles. There are brain cells that end in the wrong places. This is also preventable," he said.

According to Dr. John S. Duncan, Professor of Clinical Neurology at National Hospital, London, in 15 per cent of the cases, genetics is the main cause. It is not one gene but a pattern that causes the disorder. A lot of research is going on in this area, and it should get a boost with the mapping of genes under the human genome project.

Unlike most neurological disorders, there may be no physical evidence of epilepsy in a patient. According to Prof. Sander, the diagnosis is, therefore, made on the basis of the history of more than one epileptic seizure.

Big advances have taken place in the diagnosis and treatment of epilepsy. According to Duncan, these were primarily possible because of the development of imaging techniques that pinpoint the exact area of damage in the brain.

To reach out and identify patients, considering that there are barely 500 neurologists in India, Dr. E.S. Krishnamoorthy, Ramondway Research Fellow in Behavioural Neurology at National Hospital, London (the academic co-ordinator of the workshop), suggest ed the training of specialist nurse practitioners and health workers, especially for the rural areas. This would lead to a number of cases being identified, simple cases being treated in the community, and more difficult cases being referred to specialis ts, he said.

According to Dr. Krishnamoorthy, the ideal ratio of neurologists to patients is 1 per 100,000. But in India we have 500 neurologists for a population of 1 billion. The National Epilepsy Control Programme led by Prof. Gourie Devi and Dr. Satishchandra (bo th from NIMHANS) are trying to train at least one medical officer in every district in epilepsy. According to Krishnamoorthy, while people with epilepsy should not drive, they can marry and have children; they can even swim, but with adequate precaution and supervision. The recent rise worldwide in the number of patients in the above-60 age group has caused concern about their management. The main reason for this, according to Prof. Harkness, is the increase in cardio-vascular diseases.

The cost factor, particularly since drugs have to be taken for a long period of time, and the availability of drugs were discussed at the workshop. In this respect there is a big gap between the developed and developing countries. In India, over 80 per c ent of the patients remain untreated - 50 per cent of them in the urban areas. Surgery requires considerable investment in equipment and can be done only with an expert support team. This means large-scale investment in manpower and capital.

The other issue that was discussed in detail is the myth associated with the disorder. Public awareness should be created of the fact that it is not a mental illness, the workshop felt. Until recently, epilepsy was listed in the Mental Health Act and was a ground for divorce in India. The message from the workshop was that epilepsy, which is not a mental disorder, is curable and in most cases preventable. Thus, it is important to educate people about the disorder and reach out to those who cannot afford or do not have access to treatment by evolving simple standardised treatment models, without involving sophisticated techniques. The International League Against Epilepsy - Commission on Developing Countries has decided to concentrate its efforts on th is aspect.

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