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Jett's death can help bring understanding

Sunday, January 25, 2009

Publication: Orlando Sentinel

http://www.orlandosentinel.com/news/opinion/letters/orl-myword25newmyer09jan25,0,1191553.story

Like Jett Travolta, I collapsed at age 16 as a result of a major seizure. Unlike Jett, I didn't hit my head or suffer other significant trauma. I was much more fortunate and recovered fully. That seizure, 43 years ago, was my last, though not my first.

Like Jett, my family never mentioned "epilepsy" in any public discussion of my condition. Neither did my bevy of doctors ever use the word. There was talk of "fainting spells" and "dizziness," with occasional references to seizures. In fact, until elected to the board of directors at The Epilepsy Foundation during the 1990s, I didn't realize that any person who has two or more seizures is described as having epilepsy.

The epilepsy world's shield of privacy and fondness for euphemisms relate directly to stubborn and pervasive stigma. The Travolta tragedy offers an opportunity to rethink our understanding of and attitudes toward epilepsy. The code of silence masks the fact that more than 3 million Americans have epilepsy, as do more than 50 million worldwide. More of us in the U.S. have epilepsy than multiple sclerosis, cerebral palsy and Parkinson's disease -- combined.

Stigma is toxic in so many ways. The impact of public attitudes and awareness affects self-esteem for teenagers and others with epilepsy, public support for allocating research dollars among competing conditions, training levels for first responders who often don't recognize seizures and use inappropriate force to restrain convulsing patients, and career paths for those whose seizures are not controlled by medications.

My teenage years were hardly a bundle of fun. Given the pernicious stigma, my family and doctors may have done me a huge favor by avoiding the epilepsy label. In a survey of U.S. teens regarding epilepsy in 2007, only about a quarter of teenagers report being familiar with epilepsy. More than half underestimate the prevalence of epilepsy, getting the number wrong by a factor of 10. Only about a third know that most seizures are not life-threatening.

Our nation's fascination with celebrities and their health conditions affects not only levels of public understanding, but also levels of public and private research dollars in search of a cure. The impact of President Ronald Reagan on the Alzheimer's community, Michael J. Fox on Parkinson's and Lance Armstrong on testicular cancer are well-known. We can only imagine the supreme impact that Chief Justice John Roberts might have in reducing workplace stigma if he chose to discuss his "occasional benign seizures" more frontally.

The Hollywood community may hold the key to broader understanding and acceptance of epilepsy. Danny Glover occasionally speaks of his epilepsy. TV star Greg Grunberg of Heroes, whose son has epilepsy, has been far more willing to use the word and engender discussion than my parents were. Their candor provides help and hope to millions around the world as the epilepsy community prepares to come out of the closet.