The impact Huntington's disease can have on a family

Throughout Patricia Delyea's life, several members of her family have fallen ill and died.

Today, her family knows the cause is Huntington's disease. But for years, she had family members get sick and no one could provide answers.

Her grandmother carried the gene, which was passed on to her father. He got sick and had to retire from his job at Inco due to being disorientated and dropping things.

"Of course, no one knew what was causing this," she said. "[People] thought he was drunk. They thought he was just crazy."

Her youngest brother started stumbling when he was two years old. Again, no one could figure out what was wrong. Delyea says it was suggested to the family her brother wear a hockey helmet to protect his head.

"He was six years old when he finally passed away," she said. "He had many seizures and falling."

Until 1993, a diagnosis couldn't be given as the gene hadn't been discovered which is why the family wasn't getting answers as to what was wrong. After the gene was discovered, Delyea says her father tested positive for Huntington's disease shortly before his death.

When Delyea heard her father had the gene and could have passed it on to her, she took action.

"Some of us panicked and got sterilized in order to stop this terrible disease," she said. "I wanted six children. I wanted a big happy family."

She had already had one son, but didn't want to chance possibly passing on the gene.

'Stigma and shame'

In 2000, she got the test herself to discover it hadn't been passed on to her. She was relieved she wasn't able to pass it on to her son.

But even with current testing, the disease has greatly affected Delyea's life. Several of her siblings have died as a result of Huntington's disease, as well as one of her nephews.

"I hate it," she said. "It's a terrible thing to have in the family and of course, you feel the stigma and shame."

According to the Huntington Society of Canada, there is 50 per cent chance of passing on the gene to a child if you have it.

"At this time, there is no cure," Sarah Gauthier, with the Huntington Society of Canada in Sudbury said.

"There is lots of research happening with respect to treatment."

The symptoms of Huntington's disease vary. Physical symptoms include weight loss, involuntary movements and difficulty walking. Cognitive symptoms include having problems focusing and difficulty remembering information and emotional symptoms are depression, obsessive behaviour and irritability.

"It's like having a combination of ALS, Parkinsons, dementia and a psychiatric illness all at the same time," she said. "It's an awful disease."

Gauthier says local societies support research and help people and their families affected by the disease.