Tuesday, October 04, 2005

NJ Creutzfeldt-Jakob cluster turns suburban mom into crusader

The Associated Press on Oct. 2 reported the story of Janet Skarbek, a tax manager who is fighting to raise awareness and uncover more information about vCJD in the United States after the death of an acquaintance at the Garden State Park racetrack in New Jersey. The racetrack has been the commonality of a purported sporadic CJD cluster, although some say it's not a cluster at all and some say it's even worse than it seems. After reading about the death, Skarbek had wondered how two of just 100 administrative employees at the track be died from a neurological disease health officials say kills just one in a million people each year, usually after age 60. She began searching obituaries and identified 18 people she believes died of CJD from 1993 to 2004 and had eaten regularly at the same restaurant at the now-closed racetrack. She also researched possible clusters elsewhere.
Skarbek believes some U.S. deaths should have been classified as variant CJD and not sporadic. Both diseases can incubate for decades before symptoms such as dementia and loss of muscle control appear. vCJD usually strikes people in their 20s and takes about 14 months to kill; sporadic CJD kills in just six months, almost always people over age 50. In June, she visited Terry Schwan of Sterling Heights, Mich., whose son Jeff, an athlete and bodybuilder, died at 26 four years ago of what was classified as sporadic CJD. Schwan's son lost his memory, then his vision and died within five months, a normal span for sporadic CJD. But Schwan said sophisticated brain tissue testing showed he had the same type of CJD as British mad cow victims, leaving her with doubts. Dr. Ermias Belay, an epidemiologist at the Centers for Disease Control and Prevention, declined to discuss the case for privacy reasons. But he said fewer than 10 suspected U.S. clusters have been reported and none have panned out. In each case, testing showed some cases weren't CJD or some patients had lived elsewhere for years, so the number of verified cases was within statistical norms. Belay added that there have been no U.S. mad cow victims except for a woman born and raised in the United Kingdom who died in Florida last year. Dr. Eddy Bresnitz, New Jersey's state epidemiologist, said his investigation last year of the suspected racetrack cluster found three people died of causes other than CJD. Bresnitz ruled the deaths Skarbek linked to the track did not constitute a cluster, or unexpectedly high number of cases, because the track drew millions of visitors from a wide area.
Skarbek wants a total ban on animals in the human food chain eating blood or body parts from other animals. [Why is this still being argued?!?] Officials say that the beef supply is safe, but some researchers believe that she may be right about some cases sporadic CJD being misclassified.


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