Our Stories

When Carla’s father was diagnosed with Huntington disease (HD) in the early 1980s, it came as a huge shock to the family. None of them had heard of this fatal neurological disorder that slowly takes away a person’s ability to walk, speak, remember and even swallow.

Watching her dad deteriorate was very difficult, Carla recalls. Making it even worse was the knowledge that she had a 50 per cent chance of carrying the same faulty gene that causes HD. “It was like a great big black cloud over my head,” she explains.

A quarter-century later, Carla began developing Huntington’s symptoms herself, forcing her to give up a career she loved. But the 49-year-old Ontario woman says a lot has changed since her father’s diagnosis. We understand what causes the disease and how to provide better care. And while there’s still no cure or treatment, several clinical drug trials have begun and more are expected over the next year or two.

Carla herself has become actively involved in expanding our knowledge of HD, participating in several research studies since 2002. She also volunteers at the Huntington Society of Canada’s national office at least once a week, stuffing envelopes, typing correspondence — “anything that anybody needs help with,” she laughs. “It’s all good!”

HD has a devastating impact on every member of the families it affects: those who inherit the gene, those who carry the onerous caregiving burden and those left to cope with the loss of loved ones.

“It is such an awful disease,” Carla says. But she strongly believes that if we can keep up the current research momentum, Huntington’s won’t be a worry for future generations. “I’m really, really hopeful that they’re going to find something soon,” she says. “That’s what keeps me going.”

The Huntington Society of Canada provides support to over 30,000 individuals like Carla across the country and funds research to put a stop to HD.

Huntington Society of Canada