Epilepsy patients in India look for life partners online

Pune: When Sanvedana Foundation – an NGO established in Pune to help epilepsy patients – completed five years in February 2009, there were many achievements to recount.

Founder of Sanvedana, Yashoda Wakankar/ Photo credit: Huned Contractor/ OWSA

But there was also a need to take up a fresh challenge. And this it did in the form of launching a marriage bureau and an online portal called www.vivah.aarogya.com to help people suffering from epilepsy find life partners.

“Eight couples from our bureau are happily married today,” informs Yashoda Wakankar, who founded Sanvedana in 2004 along with Radhika Deshpande, the mother of an epilepsy patient.

The portal has quickly gained in popularity and as Wakankar points out, registrations are being done from across India, and especially so from cities like Hyderabad, Vijayawada and Bangalore.

Interestingly, the birth of Sanvedana has its seeds in Wakankar’s own life story.

“The day I had my first epileptic attack was in 1980 when I was just seven years old. I was diagnosed as suffering from left temporal lobe epilepsy and the increasing number of attacks over the years prevented me from many regular activities such as swimming, running or driving.

Thanks to my mother’s encouragement I took up indoor activities such as painting and music and I eventually became a commercial artist. I then got married and my husband introduced me to vipassana, a scientific technique of meditation. We later learned about the possibility of a surgery to cure this ailment and I underwent an operation which cured me of epilepsy forever. That’s when I decided to do something for other people suffering from epilepsy,” she narrates.

The group is run entirely by epilepsy patients and has the support of neurosurgeons in the city in terms of providing consultancy and guidance.

Its members meet once a month to share and discuss the problems most of them encounter and study the ways and means of overcoming them.

Meanwhile, the idea of doing something to help young epilepsy patients find life partners came about around two years ago when one of the members, Mohan Phatak, suggested starting a marriage bureau.

“However, that was easily said than done because we were not sure if it would be the right step. We spoke to many neurologists about whether it was safe to get two epilepsy patients to marry and it was only after all of them approved of the idea that we slowly pitched it forward,” Wakankar reveals.

Initially restricted to help make matches in Pune alone, the first meeting of prospective partners was attended by 28 women and 21 men.

“Today, we have more than 140 registered members and the fact that people are being able find the right marital partners is what has turned out to be our crowning feather,” Wakankar says.

It’s this success that made Sanvedana push for an online portal. What has also helped over the years is the awareness about epilepsy and learning to live with it.

“I got married when I was having eight to ten fits a month but that didn’t stop me from leading a regular life. The reason why we are so excited about Vivah is that love and companionship of a partner can work wonders with those suffering from epilepsy,” she adds.

Meanwhile, Wakankar is also happy about the fact that Sanvedana has been able to dispel many of the common myths and misunderstandings about epilepsy over the past five years.

“Even though medical progress has brought normal living within reach for a majority of people with epilepsy, the public’s reluctance to part with the myths and misconceptions of the past has always been a major problem.

The most common among these are: epilepsy is contagious, you can swallow your tongue during a seizure, people with epilepsy are disabled and can’t work, epilepsy patients look different, it is a form of mental illness and that epilepsy is largely a solved problem,” Wakankar elaborates.

Essentially, as she observes, what is required is a nationwide campaign to focus on epilepsy as also take research to higher levels.