Dancing at the Vatican, a 38-minute documentary about people with Huntington’s disease (HD) being granted an audience with Pope Francis, was recently made available on YouTube.
The film, which had previously only been screened at private venues, focuses on a May 2017 meeting at the Vatican in which several dozen South American pilgrims (people with HD and their families (many of whom had never left their small fishing villages) traveled over 6,000 miles to have the particular trials of their disease recognized by Pope Francis. According to the documentary, it was the first time ever a world leader said the name of the disease on camera.
The ground-breaking event, backed by prominent geneticists and organized by former TV journalist and HD patient Charles Sabine, was particularly remarkable in the sense that many of those who participated had been shunned because of their disease (due to the misconception that HD is contagious). Most of these victims had traveled from South America, where there are precipitously higher rates of the genetic disorder than anywhere else in the Western world. For this reason, the audience was full of tears and applause when Pope Francis received their scroll of requests and responded by committing that people with HD would be “hidden no more.”
Huntington’s disease (HD) is a genetic disorder characterized by a progressive break-down of neurological function, resulting in an array of physical and psychiatric problems and eventually death. It affects about 1 million people worldwide, and presently there is no cure.
For many years HD was one of the many movement disorder diseases referred to as St. Vitus’ dance, a name garnered from a legend in which the 4th-century Roman senator’s son Vitus was executed by being boiled alive in oil, literally twitching and “dancing” to his death. (Another name for the disease was once Huntington’s chorea, from the Greek word for dance.) It’s a horrific legend touched on at the beginning of this powerful film, and then revisited in a special moment at the end when Huntington’s patients find themselves on stage at the Vatican. A popular pop band strikes up a tune, and joining hands together, they dance.
And today we celebrate...