In “Twitch,” Powers explores genetic testing and learning her Huntington disease fate

Monday, November 17, 2014

 

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A still from “Twitch,” in which Kristen Powers faces her coin-flip 50-50 chance of inheriting Huntington disease (courtesy “Twitch”) 

Editor’s note: On Oct. 2, 2014, Kristen Powers visited the University of Iowa to screen her documentary “Twitch” and host a Q&A/discussion about the issues surrounding genetic testing and Huntington disease.Spoiler info: The following review of “Twitch” does not disclose the results from Powers’ genetic testing for HD, which is revealed in the film. 

By Sean Thompson 

Like the spinning coin shown at the beginning of the documentary “Twitch” coming to rest on either heads or tails, the child of a parent who had Huntington disease has a 50-50 chance of inheriting the disease. 

Those old enough to undergo presymptomatic genetic testing for HD (age 18 or older) may have already watched their beloved parent deteriorate and have their life taken by this horrible, progressive neurodegenerative disease for which there is presently no cure. Some of those at risk opt to get tested. The vast majority choose not to. 

If given the chance to learn your medical fate in this way, what would you do? Would you want to know? How would learning such information impact your life? 

These are some of the questions and conversations “Twitch” creator, producer and star Kristen Powers brings to light in the 45-minute film (her first). She knows these questions and conversations well, as Huntington disease entered Powers’ life at age nine, when her mother, Nicola Powers, was diagnosed with HD. Kristen doesn’t remember her mother before HD began its devastating impact on Nicola, causing drastic mood swings, outbursts and uncontrolled movements, and eventually leaving her unable to verbalize. 

Describing herself as “information needy,” Powers decided at age 16 that she would undergo genetic testing when she reached age 18 to see if she had inherited HD and learn whether or not she would eventually suffer disease onset like her mother. 

“I don’t like the idea of it being hidden,” Powers says in the film of her genetic risk to develop HD. “I wanted the closure of knowing.” 

Motivated in part by films like “An Inconvenient Truth” and documentary film’s ability to inspire dialogue about a given topic, Powers chose to make a documentary chronicling her genetic testing journey to create awareness for HD and spark a national conversation about genetic testing. Now a 20-year-old junior at Stanford University, Powers financed the project largely through crowdfunding, receiving modest donations from a large number of people. 

Powers interviews her friends and family, records personal vignettes on a webcam (disregard the disheveled teenage mess-of-a-bedroom in the background, Powers implores during one candid scene) and cameras are rolling when she visits the hospital for her genetic testing. As her adoptive mother points out in the film, producing the film in real time gave Powers a sense of control over the filmmaking part of what she was going through, which was otherwise an experience she had limited control of. While supportive of Powers’ filmmaking, her parents also express concerns. Would her desire to make the film in order to create HD awareness and help others who might go through genetic testing ultimately push Powers to go through with her own testing, even if she were to develop reservations during the lead up to receiving her results? Her parents concern (visible on their faces and palpable throughout the film) is certainly understandable. But as you take this journey with Powers, you get the strong sense that she does indeed want and need to know her medical fate. For her, the burden of not knowing outweighs any burden of knowing. She is self-assured and ready to address this huge dose of uncertainty in her life, at least, as ready as anyone ever is for such news. 

“Twitch” greatly surpasses any preconceived cinematographic expectations for an 18-year-old novice filmmaker thanks to Powers’ brilliance as a communicator and Editor Eva Brzeski’s skillful work. While the film looks great throughout, “Twitch” is more than just one kind of documentary. It is part educational, with terrifically produced and understandable animated graphics explaining the science behind HD. It’s also part reportorial, introducing us to several individuals in various stages of HD from other HD families, telling their stories of difficult family planning decisions and desperate need for support from the non-HD community. It also serves as a primer for the genetic testing process. Though we may not all be at risk for something known to be genetically detectable today, at the pace genetic medicine is advancing, the day when the average person may routinely have certain details revealed about his or her genetic risks (which may or may not even be useful) could be fast approaching. While it’s impossible to fully place yourself in Powers’ shoes unless you have been there yourself, her journey will hit close to home for many viewers. 

Ultimately, “Twitch” is also biographical, and the film seamlessly ebbs and flows on the waves of Powers’ personality. A very active and ambitious high school senior, we see her make her way through life with astuteness and thoughtfulness while carrying the burden of her genetic risk for HD. She cares greatly for her younger brother (who is also at risk for HD) and misses her mom, who passed away in 2011 from complications resulting from HD degeneration at age 45. And though she grew up quickly due to her mom’s illness, Powers is also an outgoing free spirit, much the way her mother was described to her by her mother’s friends, before HD onset began. Powers and her friends agree that her outlook on life and how she endeavors to live it to its fullest are in large part shaped by HD’s presence in it. 

The film concludes with the reveal of Powers’ Huntington disease genetic testing results, but “Twitch’s” impact doesn’t end there. Some who see it are provoked into conversations with relatives about one’s own potential familial medical fate. Some will find themselves considering the “what would you do?” genetic risk scenario. Medical professionals who see it will likely reconsider the personal side of finding out your medical fate, rather than just the scientific aspect. All will gain a better understanding of what more than a quarter of a million Americans (many of them young adults like Powers) at risk for HD face. Powers is making a major impact by ensuring the initiation of conversations about the important topics covered in “Twitch” isn’t left up to chance. 

Kristen Powers is currently screening “Twitch” at select locations throughout the United States and internationally. Click here to see a listing of upcoming screening locations and dates.

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Kristen Powers (front right) awaits her HD genetic testing results with best friend Daniel Woldorff, her father Ed Powers and her adopted mother Betsy Banks Saul (back row) in this still from “Twitch” (courtesy “Twitch).