TIMMINS -- Two Timmins landmarks are lit in blue and purple up this month in recognition of Huntington Disease (HD) Awareness Month. One is the sign outside of the Timmins Transit building and the other is McIntyre Headframe in Schumacher. The blue light is for HD and the purple is for juvenile HD.
"There’s a big stigma with Huntington's disease, because of the appearance of being intoxicated a lot of families had hidden that. It’s time we take away that stigma," said Lynn Walker, a volunteer with Huntington Society of Canada.
For the past few years, Walker has been making it her mission to educate people about the disease her father lived with and that her brothers now have.
"It’s really difficult for a person with the disease to deal with people that look down on them. It’s hard enough to live with this disease, that they just need a little bit of understanding," she said.
According to Huntington Society of Canada, approximately 10 families are living with the disease in the Timmins area and more than 100 throughout the north.
There are three categories of symptoms: motor, psychiatric and cognitive, making it difficult for people to receive services from just one agency and forcing young people into nursing homes.
"Because that’s the level of care they need. However, it’s really hard for somebody to be in their 30s and kind of be in that environment amongst people not their own age," said Sarah Gauthier, director of Northern Ontario Resource Centre for Huntington Society of Canada.
The HD Society is hosting a virtual walk during the last weekend of May to raise funds. The organization is able to provide some help to families, but without donations and fundraising, it's limited.
"We are a completely self-funded agency. So we rely completely on donations and grants -- we don't receive any Minister of Health funding or government funding. We’re unique in that we actually do have social workers and people in the community to provide support," Gauthier said.
She said the dominant HD gene was discovered in 1993 and research to find a cure is happening around the world, but so far, only a blood test can tell if a person is a carrier.
