For too long, generation upon generation of those who carry the gene that causes Huntington’s Disease have hidden away, becoming masters at covering up for what has become to be known as “the monster of all diseases”.
The standard definition of Huntington’s Disease shows that it is a hereditary disease marked by degeneration of the brain cells, causing chorea and progressive dementia, however the definition is flawed since it rears its ugly head differently in each person that develops the disease, which in many cases prevents a person from obtaining a proper diagnosis.
The feature length award winning film from James Valvano and WeHaveAFace.org which recently held its Canadian premiere in Guelph, Ontario, explores the experiences of those directly affected by HD, including spouses and families as well as those who care for them.
Mr. Valvano says, “When we began the project it was always our goal to include the entire Huntington’s community…not just here in the USA. The documentary removes the international ‘mask’ of stigmas via topics never discussed before”.
After receiving the DVD for review, I was apprehensive about watching it since Huntington’s Disease has affected my family in so many horrible ways including financially as well as emotionally. The film, as intense, raw and honest as it is, often reduced me to tears, but made me feel empowered and close to the people whose stories were unfolding in their own words, paralleling my own experiences of frustration, anger, sadness and sometimes even shame.
The film spans the globe and has spawned an international movement in searching for a cure and removing stigma but also a cult like sense of community as people shed their masks and tell their personal stories.
Mary Robertson, who hails from North Carolina and who is a much loved figure in the Huntington’s community due to her wonderful personality and the loving care she gave her husband “Mr. Paul” who recently passed away from HD said,
“I felt honoured to be in the documentary because of Paul and I living in a small town, I thought at one time his family was the only (black) family that had HD. Paul was proud he was going to be in the documentary because we wanted to let people know that HD also ran in black families because in the beginning HD was not considered to be a black disease. But for us to be able to let the world know that we were there, we were here, that we existed, was amazing. We were a little nervous, but James Valvano, being the great producer that he is, relaxed me and relaxed Paul and we enjoyed being in it.”
James Walters, Canadian business adviser to WeHaveAFace.org said, “Watching Removing the Mask is a reaffirmation that Huntington’s Disease is the cruelest disease on the planet! I have watched it a half dozen times and still manage to be amazed at just how strong my peers truly are! It is never easy for one to bare their most intimate stories of devastation. How many tears I shed in 100 minutes of heart wrenching footage has me feeling exhausted yet proud of my friends for having the strength to put it out there for the world to see! I am not an overly religious person but I am spiritually driven. There is a saying that holds true when I think of our Juvenile Huntington’s and Huntington’s Disease community. God saves his bravest soldiers for his toughest battles!”
I strongly recommend for everyone to watch the film, but especially medical professionals, social workers as well as law enforcement. While it is educational, it leaves you with more than knowing about this dreaded disease but rather a deep feeling about being human, filled with emotion, compassion and understanding.
