UI hosted a documentary about Huntington's diseases
Kristin Powers, a junior at Stanford University, documented her journey while undergoing genetic testing for Huntington’s disease and shared her story with University of Iowa students and staff in order to bring a greater awareness to the disease.
“I’ve heard people describe [Huntington’s disease] as a combination of Parkinson’s, Alzheimer’s, ALS, dementia, and bipolar disorder,” Powers said in her documentary of her journey, entitled “Twitch”.
Huntington’s disease arises from a single mutation in a single gene. If one is to inherit that gene, they will get Huntington’s disease at some point in their life.
At the age of 15, Powers was already having conversations about getting tested when she finally turned 18.
“I don’t like the information about it being hidden from me,” she said.
Powers has been interested in making an informative documentary for years.
“I was really inspired by the idea to be able to educate and entertain at the same time,” she said.
For some, like Rachel Clark, a third year graduate student at the UI, the documentary opened her eyes to a whole different side of going through genetic testing.
“You tend not to think about the journey of going through testing,” Clark said. “It sheds a lot of light on how complicated the events leading up to a disease diagnosis are.”
Miller said she appreciates the different perspective Powers took throughout the documentary.
“It’s really told from a perspective that’s very different from [other documentaries] because of her age, and her life experiences leading up to this point,” Miller said.
Powers’ mother, Nikki Powers, was diagnosed with the disease when her daughter was just nine years old.
The first indication of the disease in Nikki Powers was at her in-law’s 40th wedding anniversary when family members noticed that her walking was off. As time went on, her symptoms got increasingly worse, causing dramatic mood swings and lots of physical accidents that ended up with her in the hospital.
As time progresses, Huntington’s disease breaks down the brain, causing basic motor functions to fail and making it impossible to lead a normal life. Nonetheless, Powers wanted to be prepared.
Amanda Miller, a clinical social worker and research manager at the UI Center for Huntington’s Disease Society of America Center of Excellence has seen Powers’ documentary and said deciding to get tested for Huntington’s is a life changing choice.
“It’s not something you can take back once you know your gene status,” she said.
Powers said throughout her life, she always had two plans: one for if she tested positively for the disease, and one for if she tested negatively.
Powers tested negatively and is Huntington’s disease free.
Sean Thompson, the public relations coordinator for the Huntington’s Disease Center at the UI, said getting tested before symptoms are apparent is rare, and only about ten percent of people choose to do it.
Powers said due to the lack of awareness about Huntington’s disease, its victims have been unable to receive proper treatment in the past. Those who have had the disease have often been put in insane asylums, or been arrested for being mistaken for alcoholics or drug addicts.
Powers hopes to travel to campuses around the world to spread awareness about Huntington’s disease, since she said it is “an extremely stigmatized disease.”
Powers said she believes this generation is currently at a turning point, and people are becoming increasingly more aware of the disease. However, she said she still hopes to “increase empathy and sympathy” for those who have had first hand experience with the disease.
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