Request comes days before Federal Framework on Lyme Disease Conference in Ottawa
By Kristy Hoffman, CBC News Posted: May 14, 2016
Marnie LePage's daughter Brooke, 13, was formally diagnosed with Lyme disease by a lab in California in 2015.
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A volunteer group dedicated to Lyme disease awareness, prevention and support in Manitoba is challenging Canada's government to participate in what they're calling "The Lyme Sucks Challenge."
Specifically, the Manitoba Lyme Disease Group is challenging Prime Minister Justin Trudeau and Health Minister Jane Philpott to complete the challenge. It involves declaring, "Lyme sucks" before sucking on a lime, posting a video of the challenge to social media and donating to the Canadian Lyme Disease Foundation.
A similar campaign called The Ice Bucket Challenge, where participants videotape themselves dumping a bucket of ice water over their heads, has raised millions for ALS research and support.
The group's challenge for the Trudeau government comes days before the Federal Framework on Lyme Disease Conference in Ottawa, which is scheduled to run from Sunday to Tuesday.
Marnie Le Page, 40, will be there.
Le Page's 13-year-old daughter, Brooke, has been diagnosed with Lyme disease, but the diagnosis came months after Le Page believes she contracted it.
'In bed all the time'
According to Le Page, Brooke was infected at a corn maze in Manitoba at the end of October 2014. While Le Page says she does not remember seeing a tick bite, her daughter started exhibiting flu-like symptoms — including excruciating headaches, joint and muscle pain and debilitating fatigue — by December.
Before becoming ill, Brooke was a competitive swimmer, spending 20 hours per week training at the pool.
Le Page's 13-year-old daughter, Brooke was a competitive swimmer before she contracted Lyme disease. This photograph was taken at one of the last swim meets in which she was fully able to participate, in July 2014.
"By March, she was in bed all the time. She couldn't even watch television or read a book. All tests from the emergency room came back [normal]. The one thing they never tested for is Lyme disease," Le Page said.
"I requested [the test] from several different places. They said it wasn't possible to get Lyme disease at that time of year and they wouldn't run the test."
Lyme disease response requires collaboration in Canada
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Lyme disease, a serious illness spread through ticks, can cause a wide range of symptoms, including arthritis, neurological problems, numbness and paralysis, some of which can last months or years. In rare cases, it can prove fatal.
The Le Page family flew to California, where Brooke was formally diagnosed with Lyme disease at a laboratory called IGeneX, Inc.
'Our system here isn't adequate'
"Everything is at our expense handling her treatment," Le Page said. "Any doctor appointments we've had at the lab since; every treatment, antibiotics, travel costs. Everything is out of pocket for us."
Le Page has since left work to care for Brooke full-time. Still, she said it was a, "blessing in disguise" to have her daughter diagnosed out of province.
"Our system here isn't adequate for that," she said.
Man lives with 'alien' Lyme disease that 'makes you crazy'
Some common responses to her requests that her daughter be tested were, "Lyme isn't [in Manitoba]," or, "It's not very common," Le Page said.
"We could afford the testing. There are many people who can't," she said.
"I met a man [in Manitoba on Friday] who had had Lyme disease for 19 years. He struggles with it and he was in rough shape."
New hope
Le Page said the Federal Framework on Lyme Disease Conference in Ottawa has renewed her sense of hope for adequate treatment in Canada, so long as planning and development involves input from patients and caregivers.
"The fact that there is a conference and they're inviting people all across Canada — they're either patients or caregivers — is they're recognizing there is a problem that has to be addressed," she said.
"So I am hopeful that there is going to be changes made and hope that they're going to allow us to be part of that change."
As for Brooke, Le Page said despite having to travel to obtain a diagnosis, doctors caught the disease early and it has not affected her mobility. Still, the consequences have been devastating.
"She's in junior high. That's a huge part of your social development, and Lyme disease has ups and downs. She was seeing friends last summer. We were hiking. Then, in the fall time something happened and she went down again. She's still trying to pick up again," she said.
"It's a daily battle."
http://www.cbc.ca/news/canada/manitoba/lyme-disease-manitoba-group-justin-trudeau-federal-government-1.3582507
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