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Fit for life
Thousands of epilepsy patients, hopeful of a permanent cure are flocking to the neurological unit of the National Hospital, following successful surgeries for the first time in Sri Lanka, reports Naomi Gunasekara

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Will I be able to get married, bear children and lead a normal life? Will I be able to seek employment? Will I be able to attend school? Will I be able to play with friends and mingle in society? Will I be independent and free? The queries were endless.

Epilepsy patients, both young and old, ridiculed, degraded and branded as fragile beings who are burdens to society, sat in hope in the detergent-smelling waiting room. Launched an year and half ago under the guidance of Dr. Ranjani Gamage, Consultant Neurosurgeon and Chairperson of the Epilepsy Task Force, a programme to identify surgically correctable epilepsy patients and operate them, bore fruit in May. This followed five successful surgeries performed on epilepsy patients for the first time in the annals of medical history in Sri Lanka.

Ever since the news of the successful surgery came out patients have flocked to the Neurological Unit of the Colombo National Hospital in anticipation of a permanent cure. "We tried to identify persons who would benefit by surgery and studied their histories thoroughly to find out how it will help them," said Dr. Gamage, who has worked

Pix by M. A. Pushpa Kumara

tirelessly to reach her dream of performing surgery on epilepsy patients.

With the aim of providing relief to those who are marginalised and suppressed by society due to epileptic attacks, the Task Force comprising 10 consultants and 20 medics and paramedics have identified 45 potential candidates including 27-year-old Ajith (name changed) from Nikaveratiya for surgery.

Ajith has suffered three to four fits a day prior to receiving treatment and been exposed to the danger of suffering sudden attacks in the paddy fields and at river banks. "We can't be behind him all the time. He suffers 20-30 fits a month and doesn't do anything productive," said Ajith's brother. A promising student, Ajith has stopped attending school after sitting for the Ordinary Level examination. "I was called valippuwa at school and I felt embarrassed," said Ajith who is determined to undergo surgery.

In selecting the first batch of epilepsy patients for surgery, the team has interviewed over 500 who attend clinic on Thursdays and carefully examined the disabilities they suffer as a result of their fits. According to Dr. Gamage, the period for which the patient has been suffering due to epilepsy, the number of fits suffered on a monthly and daily basis were considered as against to the positive changes surgery may bring about.

"Epilepsy is not an illness like pneumonia where you can seek medication and get completely cured. You have to be under treatment for three to five years in order to 'permanently control' the illness."

While surgery is performed on patients who do not show improvement under medication despite taking two or more prescribed drugs for a period of over two years and have suffered from attacks during the same period, the epilepsy team has also considered others who are severely restricted socially as a result of epileptic attacks. A case in point is surgery performed on a 32-year-old who had suffered only two attacks in her entire life. "She was terrified that the attacks may recur if she gets married and was psychologically affected. So we relaxed the general rule, considering the impact of the two attacks on her psychological well-being."

The psycho-social issues springing from case studies are what are most disheartening about epilepsy patients, according to Dr. Gamage. Out of the 3,000-odd patients registered at the National Hospital clinic, 50 percent have not gone beyond year five and 25 per cent have not gone beyond O/Ls. Most patients are unmarried, unemployed and some are even divorced. "A mother wanted surgery performed on her daughter because a number of people refused to marry her on being told of her condition. Merely because a patient is epileptic that does not mean that the quality of his/her life should get affected," said Dr. Gamage.

While epilepsy patients, must avoid professions that involve firearms, driving heavy vehicles, dealing with chemicals, operating high-tech machines and working at heights, they can seek normal employment, attend school, get married and even have children. "

"Most cases of epilepsy can be permanently controlled through continuous and consistent medication. In fact, attacks in 75 percent of patients can be permanently controlled within three to five years of treatment. Then they find themselves unemployed because there is no possible vocational training for school drop-outs in this country," said Dr. Gamage who feels that while it is important to protect young epilepsy patients, they should not be deprived of education merely because they are epileptic.

In treating epilepsy patients, the most difficult task is to penetrate social stigma. The poorest and uneducated segments of society believe epilepsy to be a contagious mental illness running in families. Treatment delays and gaps too pose a severe threat to controlling of the disease, according to Dr. Gamage, because patients are taken for ayurvedic treatment while subjecting them to religious and non-religious rituals like bali thovil.

Having launched the programme with the assistance of the Sri Chithra Institute of Science and Technology in Trivandrum, the Task Force finds it difficult to cope with the demand for surgery without a proper place to operate from. The team faces a number of difficulties like scarcity of beds and lack of space for treatment. The doctors' room has also been taken for epilepsy patients and the camera used to video patients has been placed on a cardboard box till recently. Nevertheless, the Epilepsy Task Force is planning to launch an island-wide programme to identify patients and make them socially mobile by controlling their epilepsy through continuous medication.

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