January 15, 2004 CBS Evening News

America's mad cow scare has refocused attention on what's called new variant Creutzfeldt-Jakob disease, a brain ailment humans develop by eating meat from infected cattles. But there is another major form of the disease whose cause is not known, and some experts worry that what we fail to learn about this form could come back to haunt us. Wyatt Andrews has tonight's Eye on America.

Ms. EVELYN MAHAN (Victim's Mother): I have nightmares every night about it.

WYATT ANDREWS reporting:

Twenty-nine-year-old Carrie Mahan died quickly and horribly from a disease tearing holes in her brain. Her doctors diagnosed Creutzfeldt-Jakob disease, or CJD, a fatal disorder closely related to the human form of mad cow disease.

Ms. MAHAN: It's unbelievable. I said goodbye, but I don't think she heard me.

ANDREWS: Doctors did not think her disease came from beef, but had occurred randomly, so-called sporadic CJD. But Carrie's good friend Janet Skarbek then read that another local women, Carol Olive, was also diagnosed with CJD.

Ms. JANET SKARBEK (Victim's Friend): And then it says 'Creutzfeldt-Jakob disease,' so I thought, 'Oh, my gosh, I'm going to read farther.'

ANDREWS: Right.

Ms. SKARBEK: And then it says she worked at the Garden State Racetrack.

ANDREWS: Lightbulb.

Ms. SKARBEK: Exactly, lightbulb went off.

ANDREWS: Lightbulb because both Carrie and Carol worked and ate at the now-closed racetrack every day. A third victim, broadcaster John Weber, had a season pass at the track. In all, Skarbek believes seven victims over seven years had some connection to the track, so she called the CDC, the Centers for Disease Control.

And they said what?

Ms. SKARBEK: They weren't interested in it; it was only sporadic CJD, one in a million.

ANDREWS: While Skarbek thought this was a disease cluster, the CDC said no, that seven deaths was still within the norm of one in a million. This was sporadic CJD and, thus, no in-depth investigation.

By contrast, the British track down every report of sporadic CJD because that strict surveillance is how they discovered variant CJD, the type that is caused by mad cow.

Mr. PETER SMITH (Creutzfeldt-Jakob Disease Investigator): We don't know the cause of sporadic CJD, so any change in the pattern of the condition would be cause for investigation to see if it may give us good clu--clues towards--towards cause.

Dr. PIERLUIGI GAMBETTI (National Prion Surveillance Center): When you look at the classical sporadic CJD...

ANDREWS: In America, Dr. Pierluigi Gambetti is the top CJD detective searching for variant CJD. He does not think New Jersey had mad cow disease, but he only saw tissue from two of the seven possible victims. Why? Because not every case was reported and autopsies are not required. He worries if mad cow in humans does jump to America, he might not find it.

Dr. GAMBETTI: God forbid one of them could be a case of variant CJD of the--of theform that we acquire by eating contaminated beef, and we would never know.

ANDREWS: Not one case has been found to have a link to mad cow disease?

Ms. SKARBEK: Oh, it's easy to say there's not a link when you're not looking.

ANDREWS: What Janet Skarbek has truly found are the gaps in knowledge about CJD, a disease not always discovered and not always investigated by a government certain mad cow in humans isn't here. In Cinnaminson, New Jersey, Wyatt Andrews for Eye on America.