Lyme disease national conference a good first step, Winnipeg family says

Marnie LePage has hope that changes will come to Canada after she attended the Federal Framework on Lyme Disease Conference in Ottawa this week.

Marnie LePage says there are still big challenges to treating the disease

Marnie LePage's daughter Brooke, 13, was formally diagnosed with Lyme disease by a lab in California in 2015.

Marnie LePage has hope that changes will come in Canada after she attended the Federal Framework on Lyme Disease Conference in Ottawa this week.

LePage has seen the challenges of diagnosing and treating Lyme disease after her 13-year-old daughter, Brooke, was diagnosed around two years ago. 

"It's very apparent to me what the challenges are, and there are some very big challenges with Lyme disease, so this is a good first step," LePage said. 

The three-day conference brought together politicians, patients, caregivers and scientists to help create a national framework on the disease, which is caused by bacteria carried by infected black-legged ticks.

LePage said the opportunity for stakeholders to meet was important, especially since the first Lyme disease support group started nearly three decades ago.

"It's taken 27 years of people saying that Lyme disease exists and needs acknowledgement in order to get to this point," she said. 

Although there have been positive conversations, LePage said many big challenges persist, specifically around testing.

"As the patients, we do not feel that there is adequate testing. None of us are testing positive and we're all being denied treatment," she said. "On the other side, they're saying that the testing is adequate."

The LePage family had to send Brooke's test results to doctors in the U.S. to confirm the teenager had Lyme disease. That's why patients are advocating for a clinical diagnosis in the absence of definitive testing, she said. 

Another challenge is raising awareness. Before the conference, the Manitoba Lyme Disease Group challenged Prime Minister Justin Trudeau and Health Minister Jane Philpott to complete the "Lyme Sucks Challenge."

They haven't received a response from the prime minister, LePage said.

"Realistically, I'm not sure we would have gotten a response back from that, but it would have been amazing," she said. "If he acknowledged it, it would be such a huge step in the right direction."

LePage said she hopes patients and caregivers continue to be part of the conversation around the disease. 

"We have such an incredible opportunity to set a standard in the world on Lyme disease," she said.

At the beginning of the month, Manitoba warned citizens about the continuing range expansion of black-legged ticks, which can carry Lyme disease, anaplasmosis and babesiosis.