Epilepsy is not limiting. Look at Sir Elton John

A group of scientists and researchers from across the world have created an alliance to bust myths surrounding epilepsy and to make healthcare more accessible

It wasn't until Dr Mamta Shukla, a UP-based physician, began interviewing people on the streets of Lucknow about epilepsy, that she realised how little they knew about the condition. "Some did not know of its existence," she says. "And, the ones who did, considered it the curse of God." Her experience was far worse in the villages. In a hamlet near Rae Bareilly, she met a 14-year-old girl whose family had stopped sending her to school because she suffered fits. "The fact that she was deprived of education broke my heart." The interactions were recorded on video and uploaded on YouTube. Until now, Shukla, with the help of her team, has created close to 100 videos. But her job has only just begun.

She is a member of Ioncure, an alliance of like-minded professionals who are working towards spreading awareness about the neurological disorder. Formed last November, the non-profit has 300 members from all over the world, including scientists, engineers, physicians and researchers. According to the World Health Organisation, epilepsy is a chronic non-communicable disease of the brain that affects around 70 million people worldwide. It is characterised by unprovoked seizures. "Although we formed the group last year, it has been in the planning for two years," she tells us over a call from Lucknow. In the next phase, the team plans to organise talks, art exhibitions, street plays, and develop posters and board games as part of an outreach programme.

Dr Mamta Shukla

The alliance is the brainchild of scientist Dr Sukant Khurana, former researcher with Central Drug Research Institute, who has been researching neuroscience, drug discovery, biotechnology, artificial intelligence and data science. "I realised that in India, academia is failing to meet the needs of the nation, which is why I set up a multidisciplinary website and got people from all over the world who are interested in addressing healthcare," he says. Through this, Khurana hopes to tackle multiple aspects of health, starting with epilepsy. "What we have also realised is that in addition to raising awareness, it is important to make the solutions available all in one place, which means this may end up becoming a commercial venture in the future. The reason is that medicines aren't readily available, although the condition affects more than one per cent of the Indian population," he says.

Shukla has also roped in educator Dr Raamesh Gowri Raghavan, who can and write in 27 languages, to create content in vernacular languages. The Mumbai-based linguist has developed a game of Snakes and Ladders to highlight the dos and don'ts to be followed during an epileptic seizure. He is also in the process of creating a game of Ludo to serve a similar purpose. "When a patient suffers a seizure, he or she is given a bunch of keys to hold, or shoes to smell. But this is of no use. People try to force open the patient's mouth to prevent tongue biting, which should not be done. The game tries to bust myths like these," says Raghavan. According to him, Snakes and Ladders was originally created to discuss vices and virtues, which makes it easily adaptable to a myth-and-fact format. "In the game, the right things can vault you to a higher level, while the myths, will make you plunge."

An Ioncure volunteer spreads awareness on the street. Until now, they have targeted UP, Chhattisgarh, Kolkata, Jaipur and Udaipur

Khurana says their activities have also thrown up pleasant surprises. For instance, Chattisgarh is significantly more aware of epilepsy than other states. "I met a tribal woman, who said that while smelling leather may help during a seizure, they prefer to take medicines. This goes on to show that despite dealing with quacks, they have begun to realise the importance of legitimate healthcare," says Dr Dipasri Konar, who oversees the alliance's activities in Chattisgarh. Konar says the improvement is thanks to the work of social welfare initiatives like Jan Swasthya Sahyog that has been working in primary healthcare.

For Khurana, the challenge is to combat the hopelessness among ordinary people. "The experience of going to hospitals is generally not positive for most in rural India, with dismal physician to patient ratio. Moreover, epilepsy is often attributed to supernatural reasons, which makes people think it can't be cured. The condition does not limit your ability to contribute to the world. Look at Charles Darwin and Sir Elton John."

70m
Number of people affected by epilepsy worldwide

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