“Do You Really Want to Know,” a documentary about Huntington’s disease, aired Tuesday, April 22, in front of a sold out crowd at the Pickford Film Center in downtown Bellingham.
The film features Western Washington University professor Jeff Carroll and his family, as well as three other families affected by Huntington’s disease.
“The movie follows these families as they undergo discussions about whether or not to get tested for the disease,” Carroll said.
Carroll, who has Huntington’s, teaches behavioral neuroscience at Western as well as conducts research with Huntington’s pioneer researcher Dr. Michael Hayden at the University of British Columbia. It is important to note that Carroll, like all who are diagnosed with the genetic disease, has a 100 percent chance of contracting and dying from Huntington’s.
Medical News Today describes Huntington’s disease as “a devastating brain disorder for which there is no currently ‘effective’ treatment.”
The disease is unique in that there is a completely effective method for testing whether one has it. “You either have it, or you don’t,” Carroll said. “It’s a very clear cut situation.”
If an individual has a parent with Huntington’s, there is a 50 percent chance they will contract the disease. The certainty of knowing not found in other genetic diseases creates an ethical, moral and psychological debate about whether families with the disease want to get tested, Carroll said. 95 percent of at-risk individuals choose not to undergo testing, he said.
Carroll and his five siblings, four of whom are positive, are part of the 5 percent who wanted to know.
“From the beginning, I didn’t want to hide this stuff,” Carroll said. “There’s so much shame and social stigma that used to accompany these diseases. Early on I made a decision that I’m not going to hide this from anyone.”
Dawn Landau, who is the only one of her three siblings to test negative for the disease in her family, said the film was hard to watch.
“For everyone else it was entertainment, it was informative,” Landau said. “For me it was reliving the worst moments of my life over and over again. It was being tested, hearing that my brother, sister and mom had it. It was watching them die.”
Although the film hit Landau hard, she said that she was happy to see a sold out theatre.
“Those of us who live with this feel alone most of the time, Landau said. “To have a movie out there that paints such an accurate picture is a good thing.”
Despite his own diagnosis and the current untreatable nature of Huntington’s, Carroll remains dedicated to his research on the disease. Thanks to his work with Dr. Hayden and others, the first human trials of gene therapy will be tested in July 2015 with the hope of stopping the disease from ever being turned on.
“I think that’s really exciting,” Carroll said.
“Do You Really Want to Know” is directed by Academy Award-winning filmmaker John Zaritsky and is available for purchase and rental on Hulu on-demand.