“If it’s positive it’s a death sentence,” Filmmaker Marianna Palka says. “If it’s the opposite, I live like everyone else.”
Palka has a 50/50 chance of developing Huntington’s disease. She watched her father become completely debilitated, to say the least, and two of her siblings have the disease.
This genetic disease has been described as what Alzheimer’s, ALS and Parkinson’s disease all rolled into one would be like. Obviously, a very terrifying potential fate. But Scottish-born Palka decided to not only take the plunge in finding out her diagnosis, she decided to document it.
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“If you have ever lived with someone or had a parent with Huntington’s the last thing you want to do is walk into a room and get tested,” she told NBC News. “You know the nightmarish reality of going into dementia. It’s like being in a war zone — like being sent back to Iraq with PTSD.”
An estimated 30,000 Americans live with Huntington’s, a disease that affects their ability to walk, to think and to regulate their mood. But an even larger group — about 250,000 — are at risk, but symptom-free. In 1983, scientists discovered a genetic marker on chromosome 4, which led a decade later to isolation of the gene. Today, a direct genetic test for the disease is available at 20 centers around the United States.
Her film exposing the process, “The Lion’s Mouth Opens,” was directed by Lucy Walker (“Waste Land,” 2010) and is currently screening around the country. It will debut on HBO this spring and has been short-listed for an Academy Award in the documentary short-subject category.