As a bronze medalist in rowing in the 2004 Summer Olympics in Athens and chair of the highly successful British athletes’ commission in the 2012 London games, Sarah Winckless pursued her goals based on strenuous training, teamwork, and effective thinking.
However, Sarah faces a challenge far more daunting than most Olympians could imagine.
Since 1997, when she learned at just 22 that she carries the gene for Huntington’s disease, Sarah has faced the difficult reality of knowing that she will likely follow in the footsteps of her HD-afflicted mother Val, who requires full-time care.
Sarah has kept upbeat by focusing on athletics and her major leadership roles in the British sports and HD communities.
Huntington’s is always a family story. Sarah was the first of four siblings to undergo genetic testing. When Sarah began to feel isolated from her two brothers and sister after all three tested negative for HD, she turned once again to the “thinking challenge” she had learned in sports.
“Suddenly my siblings didn’t know what is was like to open the door of your genetic counselor and know that you’ve got a bad result,” Sarah told an audience of several hundred scientists, drug company representatives, and Huntington’s disease advocates the evening of February 24 in her keynote address at the Ninth Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., in Palm Springs, CA. “And I didn’t want them to know that. But it made me different. It separated me.”
Sarah said that she “hated” herself for “thinking and feeling that way.”
“I had to choose a thought that brought me back in, that made me part of my family – they’re so important to me,” she continued. “And I did what I always do when I need to think.”
Sarah went out for a long session of rowing, which helped bring clarity to the issue at hand. She had in mind the fact that every child of a parent with HD has a 50-50 chance of inheriting the genetic mutation.
“I came up with a thought: three out of four, we’ve beaten the odds,” she said. “And for the next two weeks, every time I caught myself thinking in a negative way, I ran that thought into my brain. And people would come and go, ‘We’ve heard the news about John (the last to be tested). How do you feel?’ And I’d go: ‘three out of four, we’ve beaten the odds!’
“And it helped, because suddenly I was part of it, and I was with them.”
Sarah struck a similarly optimistic, sometimes even jovial chord throughout her speech. (You can watch an excerpt in the video below.)
Source: At Risk for Huntington’s Disease
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