This article was published on Tuesday (1/13/2009) in the Chicago Tribune:
As a media executive and father of a child whose life has been derailed by uncontrolled seizures, I watched the Jett Travolta tragedy unfold with particular sadness. The Travolta family deserved much better from the media, especially those invasive and sensationalistic TV shows, Web sites and magazines whose feeding frenzy was nothing short of despicable. Yes, even movie stars deserve a zone of privacy when they are in mourning.
The media also wasted an opportunity to educate our country about the relationship between seizures and epilepsy, a devastating neurological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of every 100 people. That's 3 million Americans and 50 million men, women and children worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. While some people with epilepsy can lead normal lives and are able to achieve seizure control thanks to effective drugs or brain surgery, most patients do not and suffer debilitating side effects from all the seizures and medications.
Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy, and other seizure-related causes such as drowning. That's more funerals from epilepsy than those caused by other terrible diseases such as breast cancer, nearly 140 per day.
In this era of medical breakthroughs, doctors and researchers still struggle to understand what causes seizures. In two-thirds of patients with epilepsy, the cause is never known. Many children with autism also suffer from epilepsy. Thousands of U.S. soldiers are developing epilepsy after suffering traumatic brain injuries on the battlefields of Iraq and Afghanistan. Despite these numbers and all the lives at stake, epilepsy research is woefully underfunded and the search for a cure has been stymied.
Living with seizures is cruel and unusual punishment for patients and their families, no matter how old they are or how famous they might be. One never knows when the next seizure will strike and whether it will be damaging or even fatal. And for a parent, it is especially heartbreaking.
To visit CURE’s website: http://www.cureepilepsy.org
As a media executive and father of a child whose life has been derailed by uncontrolled seizures, I watched the Jett Travolta tragedy unfold with particular sadness. The Travolta family deserved much better from the media, especially those invasive and sensationalistic TV shows, Web sites and magazines whose feeding frenzy was nothing short of despicable. Yes, even movie stars deserve a zone of privacy when they are in mourning.
The media also wasted an opportunity to educate our country about the relationship between seizures and epilepsy, a devastating neurological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of every 100 people. That's 3 million Americans and 50 million men, women and children worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. While some people with epilepsy can lead normal lives and are able to achieve seizure control thanks to effective drugs or brain surgery, most patients do not and suffer debilitating side effects from all the seizures and medications.
Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy, and other seizure-related causes such as drowning. That's more funerals from epilepsy than those caused by other terrible diseases such as breast cancer, nearly 140 per day.
In this era of medical breakthroughs, doctors and researchers still struggle to understand what causes seizures. In two-thirds of patients with epilepsy, the cause is never known. Many children with autism also suffer from epilepsy. Thousands of U.S. soldiers are developing epilepsy after suffering traumatic brain injuries on the battlefields of Iraq and Afghanistan. Despite these numbers and all the lives at stake, epilepsy research is woefully underfunded and the search for a cure has been stymied.
Living with seizures is cruel and unusual punishment for patients and their families, no matter how old they are or how famous they might be. One never knows when the next seizure will strike and whether it will be damaging or even fatal. And for a parent, it is especially heartbreaking.
To visit CURE’s website: http://www.cureepilepsy.org