FOR those who have watched their loved ones lose their body and mind to the ravages of a rare disease, it is a daunting question – what if they have the same condition?
Now, a new documentary follows the emotional journey of a Scottish filmmaker as she is tested for the same incurable condition that afflicted her father.
The award winning film, The Lion’s Mouth Opens, charts Marianna Palka’s quest to find out if she carries the same gene mutation which leads to the debilitating Huntington’s disease.
Shown on the HBO television channel in the US last month, the documentary has won critical acclaim and widespread praise for raising awareness of the condition.
Palka left her native Glasgow at the age of 17 to study at New York’s Atlantic Theatre Company. She is best known in her homeland for her role in Peter Mullan’s 2011 film, Neds, and stars alongside Martin Compston in the new romantic comedy, Scottish Mussel.
She has had various TV and theatre roles, and has extensive writing and directing credits to her name.
But it is Palka’s role in The Lion’s Mouth Opens that has proved the part of a lifetime, as well as an intensely personal experience.
The 33-year-old’s father was diagnosed with Huntington’s when she was just eight, while her sister and other relatives also carry the gene mutation which leads to the condition.
The film follows two days in Palka’s life as she discusses the prospect of a positive diagnosis with friends and loved ones before meeting with a doctor, who reveals the result of her genetic test.
“Getting a positive result is like a death sentence,” Palka says at one point in the film. “And if you get the opposite, then you just get to be like everyone else.”
For the Scot, the experience of making the film, directed by two-time Oscar nominee Lucy Walker, was a cathartic experience after seeing her father with the disease.
She said: “I was really rocked when he started showing signs of it.
“It was the defining moment of my childhood and the work I’m doing now is for him and has a lot to do with the ways in which he inspired me.”
Palka, who describes Huntington’s as a cross between Parkinson’s and Alzheimer’s, admits that she is generally “anti-genetic testing”, insisting that life will always be full of uncertainties.
But she believes the film can impart some home truths to those watching.
“I do think that the message of the film is about being together and sharing the load that we have,” she added. “Everyone has some pain in their life.”
Since the film was broadcast, Palka has been named person of the year by the Huntington’s Disease Society of America.
The child of a parent with the condition has a 50-50 chance of inheriting it.