Lisa Bilodeau isn’t sure she will be cured by the incredible research being done on lupus, but that’s okay with her.
As a director of Lupus Ontario and living with the disease herself, the Burlington resident has discovered a desire to help others who are suffering.
She’s helping to promote The Walk for Lupus Ontario, which takes place this Saturday (July 8). Registration is at 9:30 a.m., kickoff is at 10 a.m. and there is a walk/non-walk option at 10:30 a.m. The local event is at La Salle Park (50 North Shore Blvd. E.) and other walks are taking part in communities across the province on different dates.
The Saturday event includes lupus speakers, 2.5K and 5K walk options, chair yoga by Yogashala Wellness, Sweets on Wheels, a food truck, 50/50 raffle, draws for prizes and Lupus Ontario swag. So far more than 100 people have registered.
The annual walk for Lupus is Lupus Ontario’s largest provincial fundraising and awareness event. It funds the Lupus Ontario Geoff Carr Research Fellowship, support and education programs for lupus patients and their families, and advocacy projects aimed at improving programs and services for lupus patients.
Lupus is a serious chronic condition, but diagnosis and treatment are improving, says Bilodeau. Someone living with lupus can be active and productive, as the disease can be treated and somewhat controlled.
Lupus can cause inflammation and pain in any part of the body. It’s an autoimmune disease that impacts the body's system that usually fights infections and causes it to instead attack healthy tissue.
That’s why the support and research of non-profit organizations such as Lupus Ontario are so meaningful to so many people.
Bilodeau has benefited from the organization's programs, and she says research has come a long way over the past two decades.
“The way medicine has changed so much, and I’m so excited about what more can happen in the next 20 years, and that goes across the board for other illnesses,” said Bilodeau, 48.
She’s particularly excited this year because virtual events – forced upon them particularly during the pandemic since lupus leaves people in an immuno-compromised position – just weren’t the same.
“We were a lot more hesitant to get together in big crowds,” she said.
Bilodeau, who’s married and has lived in Burlington for nearly 25 years, suspects she had lupus even as a teenager. With symptoms such as skin issues, allergies, pericarditis, among others, it’s a difficult condition to diagnose, and in fact, she wasn’t diagnosed until seven years ago.
Lupus, she explained, attacks any organ; it could be internal or your skin, and often there can be some other things such as fibromyalgia. In Bilodeau's case, she had thyroid problems called Hashimoto's thyroiditis, where the thyroid does not make enough thyroid hormone.
And most recently, she suffered from Sjogren’s disease, which is dryness in the eyes, mouth and nose. “It’s a pain in the eyes, I gotta tell you,” she joked, but said it truly is debilitating and nothing to laugh at. Other symptoms are body pains and fatigue.
Because it’s so difficult to diagnose, she says it's important to keep lupus awareness available to people and health care providers.
Lupus is a systemic disease and because of that, it presents differently for people all the time. Some people suffer a lot of lung-capacity issues.
“We all have something sort of different,” she said, noting she walks with a cane and is waiting on knee replacement surgery. “The more awareness we can bring, the more research, for millions of other autoimmune diseases, too.”
She’s referring to diseases such as Crohn's, HIV, cardiac issues and more.
“The more research that we can funnel into systemic research, the broader the scope of treatment available will be,” she said, adding she is grateful to have a wonderful rheumatologist who listens and has prescribed great treatments.
“I’m definitely in a better place,” Bilodeau said, adding sometimes she has to volunteer from her bed, but she's still coping.
Despite living with a disability and being unable to work full-time (she was in marketing and advertising for years), she is well enough to manage her volunteer role. Aches and body pains are a normal part of life for her, and often her joints ache.
She gets severe brain fog and when that happens, it becomes cognitive dysfunction and she can’t remember words.
“I wish there was a pill you could take or they could figure out what parts of the genes cause this and how to turn it off. It’s similar to MS; you are born with it in your system, something triggers it, some kind of stress, a trauma or they’ve gotten ill with something else.”
Sometimes, the symptoms come and go without warning, she adds. “That makes it difficult to maintain a paid position," she said. "Sometimes I’m really great and more days I’m better than not. Weather definitely impacts my function.
“I look for joy and positivity. I can’t work full time, I am disabled. But because I’m well enough to do some volunteering, I manage what I have.”
In addition to Lupus Ontario, Bilodeau also has a free (tiny) library on the front lawn of her Ireland Drive home and she volunteers with 100 Women Who Care, Burlington.
She said most of the people who volunteer for Lupus Ontario have lupus or a connection to the disease in some way.
“The walk is beneficial to us because it is purposeful,” she added. “It’s a chance for the lupus community to come out to socialize and know that the stuff we are doing can impact our personal health later,” she said.
She adds that biologic medication is key to helping those suffering from lupus, but the government doesn’t cover the costs of all the drugs. “Those medications are a game-changer. They can extend life by more than 20 years.
COVID changed a lot of things for the better for those with lupus, she said. Having everything become virtual, for instance, made some events and activities more accessible, especially when the immune system is so compromised.
For those navigating the disease, Bilodeau stresses that knowledge is power and patients have to advocate for themselves, which can be hard to do when brain fog and fatigue set in.
“When you’re going to the appointments, bring someone else to take notes and questions and that would go for any illness,” she suggested.
To learn more about the walk, or lupus, visit www.lupusontario.org.
