1. I'm tired of parents showing me photos of their children who died. I'm tired of people telling me about their friends who died. I'm tired of thinking about the kid I mentored who died.
And I'm tired of TV producers saying #epilepsy isn't serious.
No, not tired. Enraged...
And I'm tired of TV producers saying #epilepsy isn't serious.
No, not tired. Enraged...
2...one in 26 people have #epilepsy - more than Parkinsons, MS and autism combined. It kills, it destroys lives. Some, like me, survive. But we live every day knowing that we could die from a condition in epilepsy no MD understands yet called SUDEP.
But it's not serious...
But it's not serious...
3...movies and TV shows portray horrible, false, harmful, ignorant information about epilepsy for *entertainment.* In UK, some of the worst discrimination against folks with epilepsy is traced to some TV shows that show garbage. In US, @Netflix recently ran a movie so horrific...
4....in its portrayal of epilepsy that the Epilepsy Foundation issued statements to netflix saying "stop it" and to epilepsy victims "do not watch this." And we bear the consequences.
But TV producers say epilepsy is not serious....
But TV producers say epilepsy is not serious....
5...when I was at NY Times, every epilepsy article was run by me. I appreciated that, and I fixed a lot. Then, after I left, errors creeped in. But the Times tries. TV and most media - not really. Old wive's tales take the place of reality.
And they won't....
And they won't....
6...fix it. They don't even try. Because they repeat, again and again, the falsehoods from the false stories they run, the false comments they make. "Epilepsy isn't serious." "Epilepsy is cured." "Just smoke marijuana and you don't have seizures." ALL OF THIS IS WRONG...
7...kids with epilepsy go to their own camps. They find it so enthralling that some of them, when they die, have asked to be buried in their camp shirts.
Why their own camps? Because they escape the ridicule, the solitude, the ignorant terror, the orders from counselors based...
Why their own camps? Because they escape the ridicule, the solitude, the ignorant terror, the orders from counselors based...
8...on misinformation. They are tormented. Yesterday, I met a young man, incredibly impressive. He told me about losing all his friends after they saw his first seizures. He went from the popular kid to the one never invited to anyone's birthday party. And his friend died...
9...and a camper he knew died. Both of them died of epilepsy.
But the TV producers say epilepsy is not serious. They say epilepsy is cured. And then they run the 5,000 segment about puppies or Trump tweets or the same old garbage...
But the TV producers say epilepsy is not serious. They say epilepsy is cured. And then they run the 5,000 segment about puppies or Trump tweets or the same old garbage...
10...we are dying. We are tormented. And TV producers cite all the falsehoods as a reason to ignore it. We are fired from jobs, we are thrown out of school. Both happened to me. We face the prospect of death every day. But the producers say it is not serious...
11....people with epilepsy hide, praying each day that they don't have a seizure in public. They tell no one. Because of the false beliefs of the public. Which is reinforced because no one speaks. And no one can speak, because the gatekeepers to media believe the ignorance....
12...I dont know what to do about it. It is an iron circle of torment. It is an iron circle of death. And it will never end until the media stops portraying us as weird, funny, no big deal, have miracle cures, etc. There is no cure.....
13....this has been my primal scream. Because I am tired of seeing the photos of the dead, the families who have lost their children, or parents, or grandparents, and then hearing TV producers say epilepsy is not serious.
