Epilepsy is a chronic neurological disorder characterized by unprovoked seizures. Epilepsy can start at any age and affects at least 70 million people worldwide. Many more remain uncounted as some estimates indicate that a majority of people living with epilepsy live in developing countries.
Seizures are produced by abnormal electrical events in the brain. Current treatments counteract the over-excitability of brain circuits. However, less than half of all epilepsy medications are available in developing countries. Even with full access to medical care, nearly one-third of people with epilepsy are not well-controlled with existing medications.
Public awareness about epilepsy is very poor, particularly in areas with the most need. Incomplete public knowledge widens the treatment gap since many individuals do not even seek medical care. To uncover and correct misconceptions about epilepsy globally, Ioncurerx.com is launching a two-stage public education campaign, BeatEpilepsy. The first stage will identify the greatest needs in each region, in terms of countering epilepsy superstitions and providing information about the disease. The second stage will roll out a social media-based public education drive.
IonCure (ioncurerx.com) is an alliance of like-minded professionals from diverse fields, who are interested in supporting a holistic approach to improving the lives of individuals with epilepsy, including the development of artificial intelligence-based prediction for advancing diagnostic and treatment algorithms, improving access to and developing new medicines and spreading awareness of epilepsy-related issues across the globe. It is collaborating with a cutting edge US company on drug discovery, cognosetta.com and with the Centre for Cellular And Molecular Platforms (C-CAMP) http://www.ccamp.res.in/, which is an initiative of Dept of Biotechnology, Ministry of Science and Technology, Govt.of India. Initially, the company was just focused on cutting edge research but the campaign was started after a few members noticed a shocking lack of awareness about Epilepsy in several countries. Many myths abound with respect to the matter, such as epilepsy is caused by demonic possession and it is entirely incurable through modern medicine
To dispel such myths and to raise awareness about the root causes of epilepsy and the medical care available for it, IonCure team has a goal of initially creating 10,000 short videos on the matter covering vox-pops, public talks, street plays, documentaries, art exhibitions, and more. Then in the second stage, the campaign will try to reach as many individuals, who will state correct information about the disease and tag 6 more people. The first stage of the campaign is currently being rolled out in India in multiple languages, but will soon spread to all 183 countries and include several more native languages.
Several easy-to-understand games, such as snakes and ladders game has been devised to raise awareness about the right things a non-medical professional can do when they observe someone undergoing an epileptic attack. Snake and ladder game also informs them of the things not to do. Alongside this game, several posters have been created and are also being shared with schools, general medical practitioners, nursing homes and hospitals to raise awareness among the general public. The group has started a 15-day challenge in India to find people’s perspectives on the disease during the holiday season.
There are examples of games, links, videos in making on the ioncure website
(With inputs from Dr. Sukant Khurana)