A moving personal narrative about a family confronting Huntington's
disease, interwoven with a journalistic account of the biomedical
research that found the gene responsible and may one day find the
cure. In 1968, Wexler's mother was diagnosed with Huntington's
disease, a devastating neurological illness that often leads to
madness and is always fatal. Historian Wexler (Occidental College;
Emma Goldman, 1984) then learned that she and her sister, Nancy,
each had a 50 percent chance of inheriting the disease from their
mother. While Wexler's father organized the Hereditary Disease
Foundation to support Huntington's research, and her sister became
a researcher, Wexler felt shame over her failure to get as actively
involved. She reports that her own diary, one "obsessed with
self-analysis," rarely mentioned Huntington's and then only in
connection with her mother, never with herself. For years, the
family watched Wexler's mother's progressive deterioration, and the
daughters watched themselves for symptoms. A research breakthrough
in 1983 ted to a predictive test that could identify those who
would develop the illness years before any symptoms appeared. In
the most gripping part of the book, Wexler describes her feelings
about living with uncertainty and her decision not to take the
test. The research story, which makes up a large portion of the
book, is less compelling than the personal one, but the account of
fieldwork in a village in Venezuela where nearly every family has
members with Huntington's is fascinating. Wexler is at her best
when writing about human beings. At one point she speaks of her
sister as having "the insight of a woman at risk, who understands
emotionally as well as intellectually the tremendous costs of this
illness." The same may be said of Wexler. A revealing memoir that
tells as much about living at risk as it does about Huntington's.
(Kirkus Reviews)
In "Mapping Fate", Alice Wexler tells the story of a family at risk
for a hereditary, incurable, fatal disorder: Huntington's disease,
once called Huntington's chorea. That her mother died of the
disease, that her own chance of inheriting it was fifty-fifty, that
her sister and father directed much of the extraordinary biomedical
research to find the gene and a cure, make Wexler's story both
astonishingly intimate and scientifically compelling. Alice
Wexler's graceful and eloquent account goes beyond the specifics of
Huntington's disease to explore the dynamics of family secrets, of
living at risk, and the drama and limits of biomedical research.
"Mapping Fate" will be a touchstone for anyone with questions about
genetic illness and the possibilities and perils of genetic
testing.
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