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Sour pusses for Lyme awareness

Momentum building on the push to improve care for sufferers.

Prompted by a leading Lyme disease advocate, and the leader of the Green Party of Ontario, a group of Lyme sufferers took brave bites out of lime wedges Wednesday in front of city hall.

The resulting sour puss faces were the intended outcome. Those with Lyme are not happy about Canada’s ineffectual Lyme diagnostic methods and inefficient treatment approaches, and those faces showed their displeasure.

The Green Party’s Mike Schreiner took the “Lyme Sucks” challenge, along with Cecile Gough, a champion of Lyme suffers and advocate for improvements to the health care system - improvements that would better address mounting cases of Lyme disease, a bacterial infection with numerous serious health impacts.

Once his sour face subsided, Schreiner challenged the leaders of the three other political parties in the province to also take a bite out of a lime for Lyme, in solidarity and support for those with the disease.

In an interview, Schreiner said he has a number of friends who are battling the disease and he has witnessed their suffering. The issue is personal for him. The lack of adequate treatment in the province and country contributes to their continued misery.  

“Their personal tragedy is just heartbreaking,” Schreiner said, speaking of friends who have endured one misdiagnosis after another. “In some cases, I have friends who have suffered for almost 10 years. You can imagine how devastating that would be to your life, before they got proper diagnosis and treatment.”

Gough asked about a dozen people taking part in the event to take the challenge, take a picture of their scrunched up faces, and post it far and wide on social media, including a statistic about the disease on their post.

She also encouraged those present to give a $10 donation to the International Lyme and Associated Diseases Society, or to Lyme Ontario.

A Lyme patient, advocate and educator, Gough told the gathering she has lived with Lyme for 25 years – 23 of those undiagnosed. Next week she will begin four months of treatment in Florida because the care she needs is not available in Canada, she said. Many who have suffered with the disease for years have similar stories to tell, she indicated.

“Lyme disease can affect any organ or system in the body,” she told the gathering.

In an interview she said awareness of Lyme disease, and empathy for those who unfairly suffer from it, has gained momentum in recent months. She said that momentum has picked up since a conference was held in May to develop a federal framework on Lyme disease.

There is increased awareness of the problem in the public health sector, she said, adding that new research on tick-borne illness is underway, particularly at Queen’s University.

“Public health will be creating a framework with guidelines on how to prevent, assess, manage and treat Lyme disease within the next six to 12 months,” Gough said.

For the past year and half, Gough has concentrated much of her efforts on amending the Ontario Health Insurance Act, so that patients living with the disease right now can get funded for care outside of Canada. She said not a single person with Lyme disease who has sought treatment out of the country has been funded for that care.

“Thousands of people are going to the US and Europe and spending their life’s savings, all because we can’t get treatment here,” she added.

Cailey Bradshaw, 27, was at the “Lyme Sucks” gathering. She said she has been debilitated by the disease for nine years. She was initially told by doctors it was “all in my head.” She has been in treatment in the US for two years, and she is starting to feel better, responding positively to antibiotic treatment.

“The diagnostic tools in Canada at inefficient,” she said. “What I would like to see is proper and early diagnosis, and a federal game plan to get us better.”

Schreiner said it is wrong that in Canada that a debilitating disease is in our midst and is not appropriately acknowledged by the government. As a result, proper precautions are not being taken to prevent the disease, nor is there a sound approach to diagnosis or treatment.

Most of those at Wednesday’s event have been forced to get treatment in the United States, at “huge personal cost,” he said.

“No one in Canada should have to mortgage their house, declare bankruptcy, or take out $100,000 loans to get health care,” he added.

Canadian health care officials do not acknowledge that Lyme is pervasive in this country, Schreiner added. Climate change has lead to the rapid northern migration of ticks, and that fact is dramatically changing the disease’s prevalence in Canada, he said.

“The government now recognizes that Lyme is not treated properly, both politically and with our Ministry of Health,” Gough said. “While we’re waiting for the guidelines to be developed, we need an emergency strategy. I feel that one of the best ways to address the emergency strategy is to amend the health insurance act.”

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Rob O'Flanagan

About the Author: Rob O'Flanagan

Rob O’Flanagan has been a newspaper reporter, photojournalist and columnist for over twenty years. He has won numerous Ontario Newspaper Awards and a National Newspaper Award.
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