About 95 percent of people diagnosed with pancreatic cancer will die within five years, the highest mortality rate of any cancer.
When Michael Margolis was 4, his doctor took his parents aside and told them he had a rare disorder called Type I Gaucher Disease. The disease, which strikes Ashkenazi Jews seven times more often than the general population, is a genetic disorder that robs patients of an enzyme that prevents a buildup of fatty tissues in the body.
"Mother used to leave jars full of schav in the refrigerator," says a friend of mine. "Because the stuff looked like seaweed, I would run from the kitchen in horror."
It's break time in a sixth-grade classroom at Village Glen School in Sherman Oaks. Two boys play chess with an air of serious concentration, ign oring a small group of 12-year-olds talking and joking nearby.
A conference on genetic diseases held by the Cultural Foundation of Habib Levy in November led The Journal to examine the Jewish community's reduced state of awareness about genetic testing for prospective parents. During the past 30 years, large-scale genetic screening of Ashkenazi Jews in the U.S., Israel and other countries has reduced the number of babies born with Tay-Sachs, the most widely known Jewish genetic disease, by 90 percent. Yet today, younger Jews are less conscious of Tay-Sachs and even less aware of testing made available during the past five years for a newer array of genetic diseases. Geneticists and physicians confirmed that many people are not adequately informed about their genetic testing options. Regardless of their educational background, few individuals know if they fall into a high-risk category for genetically transmitted diseases. Experts interviewed maintain there has been a relaxation in vigilance about carrier screening and a consequential rise in danger signals for American Jews of Ashkenazi descent.
arbara and Sheldon Helfing never expected to have one autistic child, much less two. Their son Leland, now 5, was born prematurely and began showing signs of a neurological disorder before reaching his 1st birthday.
I'm not mental. Really. I'm not manic-depressive,hypomanic, borderline schizophrenic or psychotic. I don't hear voicesor imagine I'm being followed by Marie Osmond. I don't have tics or acompulsive need to wash my hands or avoid cracks in thesidewalk.
Like a lot of people, I could just use someone totalk to. That's all. I figure it can't hurt.
After all, my family is like a Who's Who of mentalillness.