Overcoming the Isolation of Huntington’s Disease
It was a complete shock when Daniel’s father was diagnosed with Huntington’s Disease (HD) four years ago. Daniel had “never heard of it before” and “didn’t know anyone else who had it or was at risk for the disease.”
The inherited genetic condition frequently manifests itself during mid-life and leads to a decline in muscle coordination, cognitive ability, psychiatric health and, eventually, death. Unfortunately, children of those affected have a 50/50 chance of also contracting the disease.
Daniel lives on the other side of the country from his family. He attended “a couple of support meetings” when the family first found out about the illness, but has otherwise dealt with the emotional challenges of his father’s condition and his own personal risk in isolation.
“Huntington’s Disease affects many hundreds of thousands of people, but it is rarely spoken about,” says former NBC News correspondent and now HD advocate Charles Sabine, who is gene positive for HD. “It has been hidden away by families because of the shame of the illness.”
Daniel heard on social media about a new documentary film called “Alive & Well” He attended the opening night of the movie, which follows seven people coming to terms with living with HD or being as risk for the disease.
He found the movie to be both “heartbreaking and inspirational in that it shows people the need to persevere no matter what.” Immediately after watching the film, Daniel emailed Alive & Well’s producers. They, in turn, put Daniel in touch with Charles Sabine by Skype Video Call. Watch the conversation between Daniel and Charles:
Alive & Well has started a conversation about this disease. No matter where someone lives, they can use Skype to interact with the global HD community and bring hope to the lives of those living with and at risk for Huntington’s Disease.