he team's newest findings are among the most unexpected. Often
people who seek out the test say they are trying to decide
whether to have children. Yet there have been 10 births among
the 63 who tested positive. "Part of it is life affirming," says
Brandt. "They say having children gives a sense of normalcy to
their lives." As for their children's health prospects, he says,
"they're confident of a cure." The data also show 10 new
marriages among those who found they have the gene. The spouse
is often the person who served as confidant during the sessions.
Buried in those numbers are unexpected stories. Ruth, 37, was
among the first to be tested, in 1986, back when scientists knew
only the approximate location of the gene and the test had only
95% accuracy. At the time, Ruth had a solid marriage, one son,
another on the way, and no doubts about wanting to know whether
she would get the disease that had driven her ailing mother to
make three suicide attempts. "I believe that if you know you're
at risk but don't know if you have the gene, you'll live your
life like you have the disease," says Ruth. Her plan if she
tested positive: to find a good housekeeper for her husband and
sons, then disappear. "I wanted to spare my family," she explains.
Ruth was less prepared for a happy outcome. Within a year of
testing negative, she separated from her husband. "I didn't know
what I wanted anymore," she says. "A lot of decisions I made
didn't make sense. I just wanted to be free." After the
discovery of the Huntington's gene in 1993 and the development
of a virtually error-free test, Ruth was retested. Again,
negative. She has since remarried, had a third son and trained
as a physical therapist. Often she works with HD patients.
Such tales of human resilience sustain Brandt as he watches some
of the program's participants progress from risk to clinical
manifestation to full-blown illness to death. "You can't help
being impressed by the human drama of it," he says. Indeed, the
sharing of stories, both happy and dire, is often his best tool
for compelling people to weigh seriously the pros and cons of
testing. "Most people," he says, "resonate more to the stories
than to the psychological tests and statistical results."
And the clients resonate to Brandt. "He gave me perspective,"
says Ruth. Before testing, she was afraid that she would become
"mean" like her mother. "He said to me, 'Your mother's
personality is very different, so if you think the
manifestations will be the same for you, you're wrong.' I'll
never forget that." The most moving testimony, though, came from
John, a married man who deeply desired a child but feared
passing on the Huntington's gene. In a recent letter to Brandt's
team, John thanked them for providing the "strength and courage"
to take the test, which turned out negative. Enclosed was
tangible evidence of their impact: a snapshot of his
three-month-old daughter.
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