CHAPEL HILL - As vice president of the Chapel Hill High School student body, having been already accepted at Stanford and in the running for the Morehead-Cain Scholarship at UNC, Kristen Powers has a lot going for her.
But Powers also has a 50 percent chance of inheriting Huntington's Disease by middle age. The brain disorder destroys the ability to walk, talk and reason, eventually leading to premature death.
Having known of the risk since she was 11, Powers, now 18, has taken an activist approach. She has launched a fundraiser for a documentary about how she plans to be tested for the disease in May. By Jan. 17, the second day of her fundraiser on www.indiegogo.com/twitchdoc
, she had raised over $1,000 toward an initial $10,000 goal.
Powers also has lobbied in Washington, D.C., with her dad, Ed Powers, on behalf of the Huntington's Disease Society of America. In 2010 they met with Rep. David Price, who agreed to co-sponsor the Huntington's Disease Parity Act, which could eliminate a two-year waiting period for Medicare eligibility for those disabled by the disease.
About the upcoming test in May, Powers said: "It's been a hard choice. It's important to find out early to plan a bucket list 20 years before the onset."Either way, I will try to lead life as effectively as possible," she said. "I'm hoping they will find a way to at least treat the symptoms," she added, noting that ever since her mom's diagnosis, doctors have been saying they are closer to a cure.
Although her mother, Nikki, was diagnosed in 2003, Powers said she wasn't told until 2005, when her mom began to display symptoms."At first I was in denial," she said. "She used to be klutzy. She would stumble and fall, one time scuffing her knee and another time breaking her nose."
Then the psychological symptoms and outbursts began.
Powers coped by keeping a journal, and when she moved to Chapel Hill from New England in 2007, she made friends who supported and helped her.
Among them is, Maya Handa of Carrboro, also a senior at CHHS.
"She inspires me every day with her courage and optimism," Handa said. "She hasn't allowed the possibility of getting HD to affect her attitude. Instead, she's decided to educate others about the disease and create awareness, and she deserves everyone's support."
Powers' dad, Ed, said it was difficult on the family to see Nikki's condition worsen. The couple divorced in 2003, and Ed said they received the diagnosis soon after. Powers thinks her mom may have shown symptoms as early as 1999.
After staying with her family for less than a year, Nikki required care in a residential setting by 2006.
"It probably was in the best interest of the kids to move to Chapel Hill in 2007," Ed continued, noting a child psychologist had advised him that at some point, the kids shouldn't be around a parent too much when that parent has a traumatic disability.
Powers and her younger brother, Nathaniel, continued to see Nikki four or five times a year.
Over the last couple of years, Nikki's condition worsened; she died last January.Green Tigers
Among other activities, Powers founded The Green Tigers at CHHS, a student environmental group that has been recognized by the White House, as well as in Parade and Family Circle magazines.
Through her involvement with The Green Tigers, she was nominated by DoSomething.org
for sponsorship by We Are Family Foundation for her upcoming documentary, for which she already has a producer and a director.
Ultimately, Powers hopes her documentary is broadcast on HBO, PBS, or maybe Discovery Health, with DVD distributions for sale and a short version.
There is hope that within the next five to 10 years, an effective treatment will be found for HD, according to Donald C. Lo, Ph.D., director of the Center for Drug Discovery at Duke University Medical Center.
"We hope this will be the last generation to die from HD," said Lo, who also said HD is worse than Parkinson's or Alzheimer's.Powers says there are times she thinks about losing her independence."I'm fiercely proud of my ability to work on my own, and the idea of not being able to control myself is terrifying," she said. "I also fear the deterioration of my body and not being able to do anything to keep it healthy."However, I know that after diagnosis, I will still have 20 healthy years of life to live, and that makes me extremely thankful for the time I have to life a normal life."As of Monday, Powers had raised $3,475.