Tag Archives: seizure

Epilepsy, Seizures and Twitter

Twitter can be a great platform for disseminating reliable medical advice and information. Unfortunately, it can also spread misinformation and downright offensive commentary about medical conditions and the people who live with them. That sad fact was illustrated in a study conducted by neurology researchers at Dalhousie University, who sought to investigate stigma regarding epilepsy on Twitter. A preliminary 2-day analysis showed that the word “epilepsy” mainly brought up informational content, so for 7 days they searched only for tweets containing the words “seizure,” “seizures,” “seize,” and “seizing.”

 Among 1,504 such tweets analyzed, nearly a third (32%) were categorized as “metaphorical,” such as “My blackberry just had a seizure.” Another 31% were personal accounts, such as “I feel so helpless when my dog has a seizure.” Just 12% contained informative, factual information about seizures, while 9% were ridicule/jokes, including “What do you do when someone’s having a seizure in the bathtub? … Throw in a load of laundry.” Others were categorized as miscellaneous, opinion, and advice seeking, accounting for 8%, 6%, and 2% of tweets, respectively.

A majority of the metaphorical comments were derogatory in nature. Taken together with the ridicule/joke tweets, these negative comments accounted for 41% of the sample. “This is a big problem…Even though we may think we’re doing a good job of reducing stigma, we’re not,” Dr. Paula M. Brna said in an interview during the American Epilepsy Society (AES) Meeting, where she presented the study findings in a poster.

Indeed, the “laundry” joke was re-tweeted an “astonishing” 77 times in a 24-hour period, Dr. Brna and her associates wrote in their paper, which was posted online the week of the AES meeting.

There were a few tweets that spoke out against the offensive tweets. One tweet said “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!”

The authors wrote, “The online voice of those speaking out against such negative stereotypes and disparaging remarks needs to be stronger. This emphasizes a need for improved epilepsy education and motivation for people with epilepsy as the foundation to improve public knowledge and behavior.”

-Miriam E. Tucker (@MiriamETucker on Twitter)

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When Silence Turns Deadly

Epilepsy killed Christopher Donalty, and as sure as his mother Jeanne Donalty is that the 21-year-old student athlete from Utica, N.Y., died too young, she is even more certain that the failure of his physicians to be frank with the family about the potential risk—albeit rare—of fatality linked to the disease contributed to his death.

“Patients need to know that they can die from epilepsy,” Mrs. Donalty stressed in a press conference about Sudden Unexplained Death in Epilepsy (SUDEP) at the annual meeting of the American Epilepsy Society held this week in San Antonio. “If we had known, if Chris had known, he might be alive today to tell his own story.” Instead, his mother travels the country on behalf of Citizens United for Research in Epilepsy (CURE) delivering the message that her son cannot.

Christopher Donalty died on February 21, 2002 of Sudden Unexplained Death in Epilepsy (SUDEP). Photo courtesey of http://www.cureepilepsy.org.

Christopher died in his bed, surrounded by his textbooks, in 2002, just months before he was set to graduate with honors from Florida’s Stetson University. Diagnosed with epilepsy before his senior year in high school – eight years after suffering his first seizure of unknown etiology in fourth grade and four years after a similar second seizure in eighth grade – Christopher was able to manage his seizures successfully with phenytoin (Dilantin) until his sophomore year in college. A breakthrough seizure early in his sophomore year led to the short-lived addition of valproic acid (Depakote) to his therapy regimen, which was discontinued after a few months because of intolerable side effects.

Even without the Depakote, Christopher was seizure free—or so his family and physician believed—until his death. In fact, Christopher had experienced seizures during that period, “but he didn’t tell us about them and he didn’t tell his doctor,” Mrs. Donalty explained. She hypothesized that her son’s desire to live a “normal” life not defined by epilepsy and its restrictions led to his silence. “We will never know for sure why Chris didn’t tell us about the seizures, but I do know for sure that he loved life, and if he knew that uncontrolled seizures could kill him, he would have made different choices,” she said. “The possibility of death was never once mentioned to us after his diagnosis or in the years of treatment [that followed.] We believed epilepsy was a benign, manageable disease.”

In the years since her son’s death, Mrs. Donalty has learned that many physicians never tell their patients about the possibility of SUDEP, despite the fact that it is estimated to account for 8%-17% of deaths in people with the disorder and occurs at a rate of approximately 1 in 1,000 person-years, when combining all epilepsy types and severities, and increases to 1 in 150 person-years for those with refractory epilepsy (Lancet Neurol. 2008 [7]:1021–1031; Epilepsia 2009 [50]:917–922).  “I don’t know why this is. Maybe it’s because there is no cure, or because it’s a difficult conversation,” Mrs. Donalty said. The failure to communicate the risk, however, is “unethical,” she stressed. “Doctors have no right to deny patients and their families the full story. There’s nothing worse than losing a child. But I think it’s particularly cruel when you don’t have the information that you should have had to make informed decisions.”

Neurologists Dr. Dag Aurlien of Stavanger University Hospital, Stavanger, Norway, who reported a study at the meeting about the incidence of SUDEP associated with lamotrigine therapy, and Dr. Jakob Christensen of Aarhus University Hospital in Aarhus, Denmark, who presented new data on mortality in epilepsy agreed with Mrs. Donalty’s position. “It might not be a discussion to have at the time of the initial diagnosis, but it is a discussion that has to happen,” Dr. Aurlien said in an interview. The fear of overdramatizing the risk may be behind physicians’ hesitancy to bring it up, he hypothesized.

Dr. Christensen agreed that no information, including the possibility of death, should be withheld from patients and their families. “In our [clinic] it is part of the checklist of information that should be communicated,” he said in an interview, noting that patients’ individual situations and risk factors should help guide when and how the information is offered. —Diana Mahoney

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