/ˈɛpəˌlɛpsi/ Pronunciation [ep-uh-lep-see]
a disorder of the nervous system, characterized either by mild, episodic loss of attention or sleepiness (petit mal) or by severe convulsions with loss of consciousness (grand mal).
Talking about SUDEP-Sudden Unexplained Death in Epilepsy
SUDEP is caused by a sudden, spontaneous cardiac or respiratory arrest in an otherwise healthy individual with a history of seizures.
John Travolta's son died of SUDEP, although they don't say that, because Scientologists don't admit to the existence of certain medical disorders. Florence Joyner--aka "FloJo", the Olympic runner, and martial arts master, Bruce Lee, are also believed to have died from this disorder. It is on the frontiers of medicine, and has only recently been recognized and researched. Many doctors are still unaware of it.
We are in the awkward and uncomfortable position of being the bearers of bad news. Of the 150 people present, all of whom either have epilepsy or are parents of someone with epilepsy, not ONE of them raised their hand when I asked them if they had ever heard of SUDEP.
We had never heard of it either, till the day after my son went to Heaven. But ignorance is NOT bliss. I WISH I had known. Things might have been different. That's why we decided to do this.
Pictures of Joey--trying to communicate his vitality, vibrancy and how he lived. He had epilepsy, but epilepsy didn't have him. Our son viewed his seizure disorder as an inconvenience and did not define himself by it. He knew he was in good company with Dostoevsky, Van Gogh, Julius Caesar, Napoleon, and Neil Young. This was our way of encouraging the many kids who were there whose lives are limited by seizures.
Of course, it's painful to then tell them that they are also at risk for sudden death. This was not easy to do in any way. Life is very messy.
Where there is no guidance the people fall,