Zur Auseinandersetzung über "First do no harm" und der an der Johns Hopkins Universität praktizierten Ketogenen Diät:

Jim Abrahams testimony before the Subcommittee on Labor, Health, and Human Services, Education and Related Agencies – May 2, 2002

Thank you for allowing me to appear before you today.

Frankly, I was asked by some other parents of children with epilepsy to speak today because I have had a career in the movie business, and it was the hope of those who, in the past, have seen these rooms overflow with elected officials and media to hear the testimony of celebrities and then be virtually evacuated for others less well known, that perhaps my appearance would bring just one more Congressman or one more journalist to hear our plea.

Because in fact, there are many parents of children with epilepsy who have lived with the horror, the agony of this Godforsaken disease longer than I, and who would be better qualified to testify before you about its devastating effects on their children and families, and point out the frustratingly paltry sum our government has appropriated to try to understand it.

I say this because my son , Charlie, is perhaps what you would consider a “best case scenario” with regards to his epilepsy. For you see Charlie does not number among the 400,000 Americans who have died of epilepsy related causes since his first seizure ten years ago – a number, by the way, which is equivalent to those who have been killed by breast cancer.

Also, because his seizures are currently controlled by a rigorous, high fat diet Charlie no longer has to deal with anti-seizure drugs and their mind and body altering side effects such as insomnia, diarrhea, high blood pressure, rashes, nausea, lethargy, constipation, gum growth, suppressed appetite, depression, and on and on. Women, for instance, using Dilantin, among the most highly prescribed of these drugs, are told not to have babies – not because they can’t conceive, but because their doctors are afraid of what they would conceive.

But because Charlie might be considered a “best case scenario,” I don’t want to leave the impression his chances for a normal, independent life haven’t been severely damaged by epilepsy nor do I want you to think he doesn’t use up his share of the 12.5 billion dollar annual cost that epilepsy reaps on our nation. He is mainstreamed through the public school system and his adaptive physical education, occupational therapy, one on one tutors, social interactive groups, special reading groups and public school resource programs designed to help him make up the physical and intellectual delays his seizures, drugs, and brain surgery caused him are all subsidized by public tax dollars. And, of course, none of us can guess how Charlie and the millions like him may have contributed to society had their young brains not been ravaged so horribly.

The Chart behind me displays the dollar amounts allotted by you to epilepsy research versus other diseases. I will not burn my time by repeating the inequity you can clearly see, however I will comment on it by saying that until you’ve seen your own child’s eyes go dead and roll back in your head as she drops to the ground, until you’ve watched your own child slowly fade into retardation, one painstaking day at a time, until you’ve seen your child decay from a drug reaction, or, you’ve buried your own child after she drown in her bathtub after a seizure, you can’t possibly appreciate the cruelty of this disparity.

More Americans have epilepsy than muscular dystrophy, cerebral palsy, multiple sclerosis and Parkinson’s Disease combined. Of the 181,000 new cases diagnosed this year, 75% will be children. And tragically the research budget of the national government nowhere near reflects that. As a matter of fact in the last five years you have increased funding 3% per year on average. I personally have sat through many meetings with bright, intrigued, willing, dedicated scientists who have been unable to pursue potentially invaluable avenues of epilepsy research, literally due to an inability to pay for technicians, lab rats, or even counter space.

I do not take lightly the honor of speaking for and attempting to express the frustration of the 2.5 million Americans and their families whose lives have been damaged or destroyed by the hell of epilepsy, and I appreciate that until this moment, you, like many Americans may have been unaware of the devastation epilepsy causes and the relative lack of attention it gets from the Federal government. For years now, parents like myself have come before you to help – but as this chart so clearly points out, to very little avail. Believe me it is difficult to tightrope walk the line between expressing outrage on one hand and alienating the very people from whom we are asking help on the other. So I know you will understand my opting for candor over diplomacy.

For this government to continue along its path of under funding epilepsy research when it is clear that with modern science it is merely a function of dollars until we can understand and cure this centuries old agony, it is more than a mere shame, I can’t help but feel it is callous and disheartening. You have the power to act to save lives and spare other children and their families the tragedy so many of us have known. Please do so.

Interview mit Meryl Streep

FIRST DO NO HARM" (1997)
Directed by Jim Abrahams
Meryl Streep
Seth Adkins
Fred Ward
Cameo: Charlie Abrahams
The following excerpt is from an interview with Meryl. More information on The Charlie Foundation and the Ketogenic Diet can be found below.
________________________________________
"I knew Jim Abrahams, his wife, and their family when we were living in California for a little while. I made three movies out there, and our kids were in school together. And their son, Charlie, developed epilepsy in his first year. I watched them negotiate the labyrinth of care for him, and I was witness to their frustrations and their anguish. They got swept into this whirlpool.
Charlie was not doing well at the end of the second year. They had access to all the best medical advice, the best conventional wisdom; and it was on the eve of brain surgery for him that Jim discovered the ketogenic diet in the library--very similar to what happened to this family [in the TV movie]. They flew to Johns Hopkins, which was the last place on earth that was still administering the diet.
Charlie was having ninety seizures a day and was medicated, wearing a football helmet all the time because he had no motor control. So they went to Johns Hopkins, and what happened was just absolutely a miracle and dramatic and ultimately infuriating because the information about this diet exists. Most doctors know about it--but it's not something that's emphasized in medical education, in doctors' training--and it's debunked. He went from ninety seizures a day to none. And he's been free of seizures for, I guess, up to the present.
Jim sort of put his career on hold and started a foundation to get information about the diet out to the major pediatric neurological centers around the country. People started writing to him and then Dateline picked it up. So through that network of parents, who were just eating this information like starving people, he found this family whose story he dramatized. This is about a family who doesn't have access to all the best medical people on both coasts and in between--sort of at the other end of the economic scale, people at the mercy of the health-care system.
The Diet. The diet consists of a lot of fat, meat, selected carbohydrates. So it's high in protein and fat. It has something to do with the body going into ketosis, which is like the fasting state. When they put children on this, they fast for two to five days. They don't feed them anything, and very often these kids are slight and frail to begin with. So that's kind of the hardest part. Then, when the body is more receptive, they slowly introduce certain foods, and the effects were dramatic in this case. It was just shocking that it wasn't immediately presented to the family as an alternative, because there's a lot of talk now about complementary medicine and how it can be incorporated into the legitimate gains of twentieth-century medical technology. But it doesn't work for everyone. With a third of the kids, their seizures completely go away. With another third, they're dramatically reduced. And for one-third of the kids, the diet has no effect at all on their seizures. But two-thirds are pretty good odds. The diet can be used in adults too. Our movie is full of ketogenic success stories. A lot of the faces you see on-screen--there's a woman who did it in the twenties who's a grandmother now and has no seizures. They've known about it for a long time.
Why TV? There was a lot of talk about making First Do No Harm a feature (film), but we all thought that it would be better if it was seen by a lot of people; and you can't count on that in this movie climate. So we took it to TV. It's the populist medium, where we get out what we're trying to say to the most people.
The Character. When Meryl was asked, "How do you relate to the character you play? The production notes call her "fiercely determined," she responded: Yeah, she's forced to be. But basically she's somebody who is going along in her life, the way we all do, happily, and then reality flips--and that's when you find the measure of your character, in adversity: what happens when it all goes bad. So, she's probably somebody who believes in everything that her doctors tell her--and that they are telling her the whole truth and nothing but the truth--but her faith is shaken along this journey. And then she realizes, as we all do, that you're in charge of your own destiny and of your child's health, and that there are a lot of answers out there, but that it's always going to be up to you to sift through them.
Interview transcript courtesy Mr. Showbiz.

Informationen erhalten von der
The Charlie Foundation
1223 Wilshire Boulevard
Santa Monica, CA 90403*
(800) 367-5386 [(800) FOR-KETO]

siehe dazu auch: Wolf, P., Baxendal, S. :Epilepsy surgery in literature and film. In: Epilepsy surgery, ed. Hans Lüders, Informa 2008, S.194