Word: wexler
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...first the villagers were suspicious and reluctant to cooperate. Frustrated, Wexler called a town meeting. "We explained that we were trying to find the cause of the disease," she says, "and while it might not help them, it could help their children and grandchildren." She told the villagers that her mother had died of Huntington's and that she might also be stricken. Holding up her right arm, she pointed to a tiny biopsy scar and revealed that she too had contributed a skin sample for analysis. "They really understood that," Nancy says, "and I think they soon realized that...
...cannot foretell when the first symptoms will appear or how long the victim will suffer, the outcome is certain. On the other hand, a negative result can dispel the cloud of anxiety that hangs over every member of a Huntington's family. Before advising people to take the test, Wexler carefully probes each person's attitude and outlook. "Some people can cope very well with a positive result," she says. "Others almost certainly...
...Nancy been tested? "That's a very private matter," she says pleasantly, "and I don't talk about it." Indeed, confidentiality about an individual's genetic makeup ranks high among Wexler's concerns. She is a strong advocate of keeping such information secret from employers, insurance companies, government and any agency that might discriminate against people on the basis of their genes...
Concerned about her own risk, Wexler dated but never married. Then she met -- and now lives in Manhattan with -- Dr. Herbert Pardes, head of the Columbia University medical center. "Around the time we found the marker for Huntington's, I found Herb, and it's been wonderful and fantastic," she says. "I've since realized how wrong it was for me to avoid sharing my life with someone. I held back not only because of doubts about passing the gene on to my children but because it would be unfair for my mate to be burdened, financially and emotionally, with...
Returning to Venezuela for six weeks early every spring, Wexler takes more data and blood samples and adds lines and boxes to the growing pedigree chart of her Huntington's family, which now contains the male or female symbols of more than 12,000 people and covers both sides of the corridor wall outside her Columbia office...