Two Women Against Mad Cow Disease
by Lisa Belkin
Mad cow disease — that mysterious killer that is neither virus nor bacteria — hops and jumps its way across Europe, decimating herds in Britain, France, Ireland, Italy, Belgium, Portugal, Switzerland, Germany and Spain. As it travels, we in America sit and wait. Beneath our jitters lies a wavering layer of trust: It can’t happen here. Can it? Scientists are on top of this. Aren’t they? Our superior health-care and agricultural-screening systems will protect us. Right?
Cele Sardo and Mayra Lichter aren’t so sure. Sardo is a 64-year-old former secretary from Pembroke Pines, Fla. Lichter, 44, is a former federal prosecutor from nearby Miami. Neither has any scientific background, certainly nothing that would qualify her as an expert in mad cow disease. Neither has ever met anyone who has the human form of the disease; in fact, mad cow isn’t even their main interest as activists. But because each lost a beloved family member to a related disease, Sardo and Lichter have done enough research to qualify, in a very uncrowded field, as experts in mad cow. And as such, they have discovered that although not one case of infection by mad cow has been reported in the United States, official statistics may be wrong — and the data they’ve developed, in their amateur way, may now be scientists’ best route to the truth.
Their remarkable tale began on a day in 1989, when Sardo’s 56-year-old husband, Joseph, a data processing administrator, started feeling dizzy. By the next morning he was having trouble articulating sentences, and by that afternoon, in the doctor’s office, he could not name the vice president of the United States or count backward from seven. At dinner time, he inexplicably left the table, retrieved his work ID card from the bedroom, pinned it to his shirt, then sat back down to eat. Three weeks later, he began having seizures. His wife could see that she was losing him, but all the test results came back negative —no evidence of a stroke or brain tumor, no evidence of anything. Forty-seven days after his first symptoms, Joe Sardo was dead.
Three years later, Lichter’s 74-year-old father, an international banker, started acting equally odd. He’d forget which highway exit to take when driving home, or he’d make a wrong turn on his familiar daily walk. Soon he couldn’t eat, walk or use his hands. Once a lawyer and a judge in Cuba, where he was born, he now hallucinated that roaches were crawling all over his body. On February 14, 1993, three months after the first symptoms appeared, Felix H. Reyler wished his wife a happy Valentine’s Day. That was the last thing she or his daughter heard him say. He died two weeks later.
FROM PERSONAL TO POLITICAL
Both Felix Reyler and Joe Sardo were destroyed by Creutzfeldt-Jakob disease (CJD), a rare disease that shuts down the brain, bit by bit, over several months, until the victim dies. The course of CJD is frightening, with patients suffering a bizarre spectrum of symptoms. Some see everything upside down; others imagine bugs everywhere.
When Cele Sardo and Mayra Lichter first collided with CJD, they had never heard of the disease, nor had many of the doctors they consulted. Now everyone has heard of it, though not necessarily by that name. A similar disease in cattle is called bovine spongiform encephalopathy — in other words, mad cow disease, which can be transmitted to humans via infected meat. The human form is known as variant CJD (vCJD).
Like so many families transformed by their brush with a disease, Sardo and Lichter have gone from knowing nothing to knowing more than they would like.
Sardo and Lichter have set out to do surveillance of their own, to create another layer of defense by compiling data that the government may have missed. They are just two women with a computer, and a determination to keep others from dying as their relatives did — a most American form of grassroots activism. “No, we don’t know what we’re doing,” Sardo says. “But we can’t let that stop us.”
Sardo is outgoing and bubbly, Lichter more reserved and businesslike. Opposites joined by a cause — offering advice and information to families of new CJD patients — they have become close friends. Their first step, when they decided to form the Creutzfeldt-Jakob Disease Foundation in 1993, was to educate themselves, which at the time was surprisingly easy to do because so little was known about CJD.
Most experts, they learned, believe that the disease is not caused by a virus or bacteria and is not a rapidly growing mutation, like cancer. Medically, it is a category unto itself, and it begins with a protein known as a cellular prion. In one person per million — yes, those are the odds — the prions become abnormal, eventually eating spongy holes in the brain that destroy the person’s ability to function.
Once Sardo and Lichter mastered the facts, their next job was telling families that the foundation existed, which they did by leaving its name with umbrella groups like the National Organization for Rare Disorders. For three years, the women fielded a handful of calls and letters each month from spouses and children of newly diagnosed patients, all seeking help and information. Then in 1996, Lichter says, “all hell broke loose.”
That was the year that they launched their website, cjdfoundation.org, and coincidentally also the year that mad cow disease burst onto the world stage. Suddenly their fledgling site was flooded with questions, not just from a few families of CJD victims, but from anyone on the Internet who was worried about mad cow, at an average of 150 e-mails per month.
In other words, mad cow has put CJD on the map, a development the two women hope will someday bring about a cure. “It’s horrible to know that something as devastating as mad cow had to happen in order for the cause of CJD to get ‘all this attention,’” Sardo says. Lichter agrees: “We want there to be more research. But it’s tragic that we’ll get it because people elsewhere in the world are dying.”
Recently, she and Lichter received a letter from a Kuwaiti scientist who said that he wanted to come to Florida and learn more about CJD at their “esteemed institute.” Such descriptions both amuse and terrify them.
“It’s a big world out there,” says Lichter, “and just the two of us sitting here.”
Can you really call that a fair fight?
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