Go girl go. Live life to the fullest in spite of epilepsy. That is what Dr.Sanjeev V. Thomas and his team of doctors at Sree Chitra Thirunal Institute of Medical Sciences and Technology have been propounding. He is responsible for founding the Kerala Registry for Epilepsy and Pregnancy in 1998. One of just five Registries in the world, KREP treats women with epilepsy and related issues. One of the most important conclusions this body of research has reached is that a woman (or man) with epilepsy can live a full and satisfying life.
Dr. Thomas, who is currently the Secretary of the Indian Academy of Neurology (IAN) had positive words for patients at the 13th Annual Conference of the Indian Epilepsy Association and The Indian Epilepsy Society, in Kochi. There are no gender differences in how epilepsy manifests in men and women, but women with epilepsy certainly face more problems in Indian society than men.
Gender bias
This is because as a society “we have consciously made a gender bias regarding the disease,” says the doctor stating that myths and misconceptions about the disease abound. “These are used as bargaining tools in marriage alliances.”
A diagnosis of epilepsy can impact all aspects of life. To begin with, parents of girls with epilepsy are sometimes hesitant to continue sending them to school for fear of disclosure. This limits their employment opportunities and social participation.
When it comes to marriage there are other concerns. “Most young women and their families fear negative responses to the disclosure of epilepsy, particularly during marriage negotiations. As a result, many choose to conceal their condition to improve their marital prospects. And more than 95 percent conceal their epilepsy from others in their social network,” says sociologist Aparna Nair, who has been working on stigma and discrimination among women with epilepsy. The study suggests that such secrecy and concealment can have negative effects social, psychological and physical effects which in turn can increase the chances of a seizure.
Although most people are aware that epilepsy is a medically treatable condition, many misconceptions still thrive.
A common belief is that women with epilepsy have difficulties conceiving, having healthy babies, raising children and that epilepsy worsens during pregnancy. This is a misconception, reports Dr Thomas, saying that epilepsy worsens only in 30 per cent of the cases. By and large infertility is not an issue. Dr Thomas' work reveals that 90 -93 per cent of babies born to women with epilepsy are healthy with only 7 per cent with the risk of birth defects. Another common belief is that anti-epileptic drug is passed on to the child during breastfeeding and hence breastfeeding is dissuaded by ignorant family members. In reality only trace elements of the drugs are passed on to the child. The drug can be safely taken after nursing and a two-hour gap between the dose and nursing is adequate protection.
The powerful stigma attached to the disease can lower a woman's self-esteem, restrict her movements and reduce her status in society.
Economically, the recurring costs of treatment add to their burden. An unsupportive family is often the last straw.
Treatment
A large number of people are not receiving treatment for epilepsy in India. This treatment gap is around 35 per cent in Kerala, in spite of the high health awareness. There is a need to develop a national epilepsy program and bring the treatment closer to the people, says Doctor Thomas.
“Although there are approximately 10 million cases in the country, we still do not have a national policy for this condition and very little state commitment. It was only in December, 1999 that institutionalised discrimination against people with epilepsy under the Hindu Marriage Act and the Special Marriage Act was addressed. Social, cultural and legal constructions of epilepsy remain far behind advances in current medical understanding of the condition,” says Aparna. But the contribution of doctors and dedicated workers in the field is slowly taking India forward. We have come a long way from the times of smelling salts, shoe, onion or holding an iron key to treat seizures.
Factfile
● There are approximately 5 - 7 million persons with epilepsy in India, yet we do not have a national policy on the disease.
● There are no legal constructs against epilepsy in India.
● Secrecy is the single biggest hurdle in treating the disease, with 95 per cent women deciding to hide that fact.
● With treatment most persons with epilepsy can lead a normal life.
● Epilepsy may worsen during pregnancy in only less than a third of women.
● Most women with epilepsy have no fertility problems.
● More than 90 per cent of women with epilepsy have healthy babies.
● They can breastfeed their babies and attend to all the parenting requirements.
