International Epilepsy Day (IED), falling on Feb. 8 this year, calls attention to the needs of the roughly 50 million people globally who are affected by the brain disorder.
“This is a day for everyone, no matter where you are, no matter how small your group or large your area, no matter whether you focus on the medical or the social aspects of the disease,” states the IED announcement. “We want you to help us celebrate International Epilepsy Day. Let’s speak with one voice.”
Dovetailing this event is Seizure Action Plan (SAP) Awareness Week, Feb. 8–15. The week is aimed at underlining the need for patients and their healthcare team to develop detailed treatment plans, particularly for emergencies.
Epilepsy is a condition in which the brain’s nerve cell activity is disturbed, causing seizures. In addition to other disorders, it is a characteristic of Lennox-Gastaut and Dravet syndromes. Epilepsy may be caused by genetics, head trauma, or a brain tumor. For some, the cause is unknown.
Through fundraising and other annual efforts on the second Monday of February, IED promotes awareness of epilepsy in more than 130 countries. The event is organized by the International Bureau for Epilepsy and the International League Against Epilepsy.
As part of IED, patients are sharing their stories online. In one video, Illiya Fakour Rashid, a 13-year-old from Iran, explains how epilepsy has affected his life, and how learning to understand the disease has helped him to think of it as a companion.
“I started to be friends with him,” he said of his condition. “We have many different types of goals in mind, and we’re following our goals. I want to [say] thank you to all the doctors who have helped me in my journey.”
A new effort for this year is the 50 Million Steps challenge, so named for the number of people thought to have the disorder that affects nearly every aspect of their lives. In the run-up to IED, supporters walked to raise epilepsy awareness, improve its visibility, and increase understanding about the disorder. The goal was to have at least 500 people walk 20,000 steps weekly during the campaign to raise funds for care and research.
Participants were encouraged to share their progress on social media using the hashtag #50MillionSteps. A $250 prize is being offered, plus awards for videos of participants and their families and pets.
Again for this year, IED supporters around the world got landmarks to “shine a light on epilepsy” by having them lit in purple, the official color for epilepsy awareness. Last year, those landmarks and structures included the Colosseum in Rome. Tower 42, one of London’s tallest skyscrapers, projected the IED logo.
A number of resources are also available, including social media images, posters, promotional cards, educational information, and graphics for Facebook and Twitter.
Planned global events include a seminar in Croatia, a forum in Malaysia, observances in Iran, and school activities in Cameroon.
“This is a powerful opportunity to highlight the problems faced by people affected by epilepsy, their families and carers, in every region of the world,” Epilepsy Alliance America states on a webpage about the event.
Meanwhile, SAP Awareness Week, organized by the Seizure Action Plan Coalition, features a social media campaign and new website aimed at getting more people to establish a seizure rescue plan for emergencies. The coalition is a collaboration of the Dravet Syndrome Foundation, the Lennox-Gastaut Syndrome Foundation, and the Tuberous Sclerosis Alliance.
“About one-third of people with epilepsy will eventually develop refractory epilepsy or drug-resistant epilepsy, making a seizure action plan an important management tool, so this new awareness week is critical for educating the epilepsy community about this important issue,” said Mary Anne Meskis, executive director of the Dravet Syndrome Foundation, in a press release.
A 2017 study found that 30% of adult patients and 45% of pediatric patients have a seizure action plan.