Participants at epilepsy awareness walks were invited to write their personal epilepsy stories in just four words to inspire those affected to think differently about the condition. Photos of the walkers holding up their four-word signs were posted on the Epilepsy Advocate Facebook page, accompanied by text asking fans of the page to share their own four-word epilepsy stories. In eight months, “My Four Words" Facebook content reached 942,878 people and generated 23,591 likes, 3,656 shares and 1,736 comments. Additionally, 76,437 users engaged with the content and 52,402 people “talked about it" on Facebook. Engagement was increased by a media alert, press release containing a quote from Epilepsy Foundation acting president Tony Coehlo and Flickr album highlighting program content. Epilepsy Advocate is sponsored by a pharmaceutical company, UCB, Inc, and as such, all communications are highly regulated by FDA making the level of activity surrounding the campaign an impressive win.Epilepsy affects 65 million people worldwide, with 200,000 new cases diagnosed each year in the U.S. alone. Despite the dozens of antiepileptic drugs (AEDs) available, approximately 30 percent of people with epilepsy continue to have seizures that can severely limit their lives. Additionally, epilepsy continues to be shrouded in myths, as detailed in a 2011 New York Times piece: “Stigma Is Toughest Foe in an Epilepsy Fight." Jeneba Kabba explained how she was taken to a healer in Sierra Leone, who boiled herbs and made her inhale the fumes for hours. “The treatment was supposed to drive out the demons thought to cause epilepsy; she nearly fainted and could have been burned…But worse was yet to come: She was forced to drink a two-liter bottle of kerosene. ‘Mi ches don cook,’ she says in the Krio language, her voice faltering even now: ‘My chest started to boil.’ Only a panicked trip to the hospital saved her life." In order to raise awareness of this often misunderstood condition and inspire those affected to think differently about it, we invited participants at the Epilepsy Foundation's National Walk for Epilepsy and the Epilepsy Foundation of Georgia's Magnolia Run to write about their personal stories with epilepsy – in just four words. Photos of attendees holding empowering four-word signs were posted on the Epilepsy Advocate Facebook page, accompanied by text calling for others to share their own four-word epilepsy stories digitally. The results painted a vivid picture of life with epilepsy, capturing the trials and triumphs these everyday heroes face and revealing a community united in the effort to live full lives in spite of the condition. One woman thanked her doctor with, “you saved my life;" a man proclaimed, “epilepsy won’t define me." Highlights of this compelling, crowd-sourced content were captured in a “30 days of epilepsy awareness" Facebook album commemorating Epilepsy Awareness Month and the four-word movement swelled, and by December 2012 "My Four Words" Facebook content had reached 942,878 people and generated 23,591 likes, 3,656 shares and 1,736 comments. Additionally, 76,437 users directly engaged with the content and 52,402 “talked about" the campaign on Facebook. Facebook engagement was further driven by the posting of media alert, press release and Flickr album on both the Epilepsy Advocate and Epilepsy Foundation Facebook pages, highlighting the "My Four Words" program and content. Have you shared your four words yet?
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