Sudbury woman opens up about her father's Huntington's disease
SUDBURY -- It's a disease that affects about one in every 7,000 Canadians, and for the entire month of May, advocates around the country are raising awareness about Huntington's disease.
"Not many people are aware of Huntington's disease," said Sarah Gauthier, the northern Ontario resource centre director for the Huntington Society of Canada. "I think it's really important to raise awareness to help with the services available for individuals in the community, (and) to reduce some of the stigma associated with Huntington's, as it can look like a lot of other diseases that people aren't aware of."
Lauri Miller, president of the Sudbury chapter of the Huntington's Society, is the daughter of a man with Huntington's disease.
"My dad has been misunderstood a lot throughout his life, so the idea of people being able to understand a bit more about the disease and what it entails and what the symptoms look like, are incredibly important to me," said Miller.
She says the lack of awareness has caused some problems for her father and in her experience, even the authorities have mistaken the symptoms of Huntington's for something else.
"The thing with my dad, the way Huntington's presented itself was with his movements. He almost appeared to be intoxicated. So, my dad would be walking to the grocery store, just to get some groceries, and there's been many times where he's ended up being picked up by the cops and put in jail for public intoxication," said Miller.
Huntington's is a neurodegenerative genetic disorder and children of people who have it have a 50 per cent chance of developing it, too.
"My dad started presenting with the movement type symptoms and once we went through some testing, we found out that it was Huntington's disease," said Miller.
She found out it was hereditary when her father was diagnosed.
"One of the things I went through is we didn't realize that it ran in my family," said Miller. "When (I) learned about the genetic component, I realized that I was at risk of having it. I also have two daughters who, as a result, would be at risk as well," added Miller.
The Huntington's Society of Canada and local chapter branches offer education around how to manage situations, support for individuals and families and advocacy showing that people are not alone.
Miller says when she first found out about her dad's diagnosis, the local Sudbury chapter played an important role.
"I definitely felt really scared and really alone and was looking for a community of people, like a community to learn more about it, to see the outcomes of it and to talk to like-minded people who were going through the same thing. The chapter provides that," said Miller.
She went through genetic testing and found out that she is not a carrier of the gene, so she and her daughters are not at risk.
"I told myself that with my genetic testing, either way, I was going to be a big advocate for it," said Miller. "If I was gene-positive, then I'd have to show my kids what that looks like and hopefully be a positive example for them."
Knowing the number of resources that it takes for someone who has the disease has inspired her to be a champion for others.
The Huntington's Society of Canada is a self-funded agency that relies on donations, fundraisers and grants. Gauthier said most fundraisers typically happen from April to June, but due to the COVID-19 pandemic, most have been cancelled or moved online.
However, the agency is still finding ways to raise awareness and money.
Until the end of June, an anonymous donor has offered to match every donation to the Huntington's Society of Canada. While public fundraising events are on hold, donations can still be made on the website.
Gauthier says there is no monetary goal right now, but every little bit helps.
"One of the biggest pieces with COVID-19 is it definitely impacts our caregivers and the supports that they have access to while they're caring for their loved ones," said Gauthier. "To be able to provide support to those that are trying to care for someone with Huntington's disease and (for them to) know that we're still here and we can still offer supports remotely, video conferencing, those types of things, I think it's really important."
Officials say there are a number of families who are at risk of Huntington's disease, but they have no way of knowing exactly how many until symptoms present themselves.
Local branches of the Huntington's Society say they have resources and support to show people they aren't alone.