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.)
At dinner, Sarah regaled a group of conference attendees with
other stories from her athletic career as well as her mother’s spirited fight
against HD. Though HD patients rarely live two decades beyond onset, Val has
now lived with the disease for about 25 years.
I felt infected by Sarah’s optimism.
“In all of my years of dealing with HD, you are the most positive
individual I have ever met,” I told Sarah as I prepared to retire for the
evening.
I hugged her and gave her a brotherly kiss on the forehead. “You
are not going to get HD,” I declared. She smiled broadly as she thanked
me.
As an HD gene carrier, I live with the stark knowledge of the
disease’s inevitability. However, scientists believe that personal enrichment
and staying active and positive might very well help delay onset. And there is
the very real hope of an effective treatment for Sarah, me, and the entire HD
community.
Sarah Winckless and Gene Veritas (photo by Simon Noble, CHDI)
That night and into the next day, I thought of how I need to
maintain my own positive attitude – not just to bolster myself in the fight
against HD, but to become a better husband, father, coworker, and citizen.
As the HD therapeutics conference proceeded, Sarah’s spirit lived
on as the participants presented new research demonstrating a deeper
understanding of HD and continued progress in the quest for treatments.
We all need to become infected with Sarah’s optimism.
Like the Winckless family, we must all bond together in this
fight.
As difficult and terrible as it may feel, we are never alone.
“Three out of four, we’ve beaten the odds” – despite her own
adversity, Sarah found joy in her siblings’ good fortune.
She has reminded us of a key lesson: no matter how difficult our
situation, our lives mean so much more than the fight against HD.
Next time: a report on the therapeutics conference.
Next time: a report on the therapeutics conference.
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