Canadian researchers have turned to Twitter for a snapshot of public attitudes toward epilepsy. But what they found was surprising — compassion and understanding of the illness, it seems, are in short supply in the Twitterverse.
As an example, a new study published in the journal Epilepsy & Behavior casts a dispelling light on a Twitter dialogue about epilepsy.
Kate McNeil and colleagues from Dalhousie University in Canada analyzed data collected from Twitter to get a glimpse of how epilepsy is portrayed within the twitter community.
Twitter allows its users to communicate through posting of “tweets” limited to 140 characters. The channel has gained worldwide popularity since its inception, with approximately 110 million tweets per day from 200 million users worldwide counted in January 2011.
Twitter is thought to have influenced recent social upheaval, including the 2011 Egyptian revolution and the 2010-2011 Tunisian protest (however, data supporting such influence has largely consisted of anecdotal reports).
In their study, published in the journal Epilepsy & Behavior, McNeil and colleagues analyzed 10,662 tweets collected during one week in April 2011 mentioning the word “seizure” or “seizures.” They found that 41 percent of these seizure-related tweets were considered to be derogatory in nature.
Fortunately there were a few tweets that spoke out against mocking those with seizures. For instance, one wrote, “Why do people joke about epilepsy and seizures? Do they joke about cancer? Attach your brain 2 a car battery & see how funny it is!”
Researchers believe a stronger online voice is needed to speak out against negative stereotypes and disparaging remarks.
In this case, they emphasize the need for improved epilepsy education to advance public knowledge and behavior on the topic.
The study concludes that although Twitter could hold the power to positively affect how epilepsy and seizures are perceived, currently an epilepsy stigma is being perpetuated instead.
“While we are well aware of the stigma faced by people with epilepsy, we were shocked to see just how pervasive the problem is in social media. It certainly emphasizes a need for public campaigns to combat these negative attitudes,” said Dr. Paula Brna, a pediatric neurologist and corresponding author of the study, based at Dalhousie University in Canada.
The issue has spread within the medical community with Dr. Joseph Sirven, professor of neurology and chair of the Department of Neurology at Mayo Clinic in Arizona commenting in an accompanying editorial.
“It is now time for the epilepsy community to rise up, have our own Twitter revolution, and alter the way the condition is perceived. There is too much suffering and too great a burden for this to go unchecked … By taking charge, we can potentially change the equation and allow the silent voices of individuals with epilepsy to rise up, revolt, and finally correct the misperceptions and eliminate the stigma associated with the condition once and for all.”