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Living well with Epilepsy


By Shruti Ambavat


Get your facts right on Epilepsy and the truth about the many myths

that persist around this medical condition




Epilepsy is one of the most dreaded and the most misunderstood diseases. There is a total lack of awareness in India of this disease. Epilepsy is a problem where seizures occur in the brain. A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. In India, many patients (especially rural) suffering from epilepsy do not wish to reveal their identity. It remains a stigma for them throughout life. In earlier times, people mistook epilepsy for punishment of sins from God or a witch’s black magic and would stay away from the patient thinking that it is contagious. In 1900s, US also had laws forbidding people with epilepsy to get married or become parents.


One should care to understand that epilepsy is not a mental problem or a psychosomatic condition but just another disorder likes diabetes, high blood pressure for instance. In India, 1% of the population suffers from epilepsy. And yes, the sufferer is called ‘a person with epilepsy’ not ‘an epileptic’ which might sound too hard-hitting like a psychotic person etc.


Epilepsy, also known as ‘epilepsies’ is mostly identified with seizures. If a person has had two or more seizures then he/she is most likely to be suffering from the disorder. Dr. P. P Ashok, Head of Neurology Dept, Hinduja Hospital says, “Many patients who come to me try to talk their way out of epilepsy. They give it weird names like sudden seizures or body shivers and say that it is not something as severe as epilepsy. They have to understand that epilepsy is curable through proper medication. In extremely rare cases where frequent medication also shows no effect, the patient has to undergo operation.” Surgery works where medicinal drugs are incapable – the part of brain (the source) that triggers seizures is isolated from the rest, so that seizures are not reached to the whole brain. Another method is the ‘corpus callosum’ method where the tissues connecting the left side of the brain to the right side are cut so that only a part of the brain gets affected at the time of attack. But Dr. Ashok says that 70% of the cases can be cured through drugs within 2 years and the rest will have to continue medication lifelong but without any problems.


The cause of this disease is still unknown. For a layman, epilepsy has always been a mystery but science says, it mostly occurs to people with severe head injuries or extreme fatigue. In India, adolescents to teenagers suffer from epilepsy. It is also said that epilepsy can be hereditary but those types are curable. Dr. P.P. Ashok says, “I get young patients who wish to go abroad for studies but their parents are scared to leave them alone and then there are young girls who are told by their parents to keep mum or it might ruin their marriage prospects.” But he quickly adds, “Though in ultra-urban cities like Mumbai, people are slowly accepting it.”


In urban regions people have better understanding of the disorder due to better education, public awareness etc. But in small towns people are orthodox and consider it a punishment or even getting possessed by some ghost and the first aid tool is to make the patient smell onion or sole of a shoe at the time of the seizure. The seizure normally lasts for few seconds or a maximum of a few minutes. Rarely cases have been reported where seizures act like an agent where one seizure triggers another to another (called status – epilepticus) in which the patient should immediately be taken to hospital where he receives intravenous injections as it can be fatal. When a patient is under seizure attack people around him/her should take care that all sharp or harmful objects be kept away and they should try to put a spoon or something in the mouth so that the teeth do not bite out the skin or tongue. Most importantly, the patient should be made to sit in such a position where his head is down like in a sitting position with head down so that the blood that comes due to any cuts inside the mouth does not enter windpipe or foodpipe, making the person unable to breath.


“I was shocked, terrified and confused. I didn’t know how to react to this situation and my father advised me not to reveal about my condition to anybody including close friends, which was uncomfortable because I felt like a stranger in front of my own best friends,” says Amita Aggarwal, an engineer (named changed). Amita’s friend says that when the first time they saw her during the seizure they were extremely scared but later on felt very sad for her and took extra precautions like reminding her of medicines to be taken on time and being careful while she drives. Amita continues, “Initially I wasn’t used to taking medicines every day, I felt like an ill person, but now I am happy that these medicines have helped me lead a normal life where I drive and do all sorts of things a normal youngster does.


Another myth is that people with epilepsy are also considered mentally disturbed and slow learners, but how many of you know that famous musician Beethoven, Lionel Blue, writer Agatha Christie, Truman Capote of ‘Breakfast at Tiffany’s’ fame and actors like Richard Burton, Danny Glover suffered from epilepsy.


One common complaint many patients have is that epilepsy is not well handled in movies where they show it has a psychotic problem or a Devil’s handwork. A common example is the famous Hollywood flick ‘The Exorcism of Emily Rose’ where possession and epilepsy are shown in the same light as though connected to each other. The person suffering from epilepsy needs family and friends’ support and can lead a normal life with confidence.