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Lyme sufferers raise awareness |
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Written by Delon Shurtz
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Saturday, 19 September 2009 |
Joey MacGregor was diagnosed with Lyme disease in 2003. Given the difficulty diagnosing the disease, she’s fortunate it was even discovered.
Unfortunately, she had the disease for nine years before it was properly diagnosed, and now there’s little hope she’ll ever be cured.
“My biggest challenge is getting through every day,” she said during a “Wall of Hope” awareness event in Galt Gardens Saturday. “The best I can hope to do is get it managed.”
When things aren’t going so well, she has to take a combination of antibiotics. But when her immune system starts to suffer, she has to stop taking medication, and in a short time the symptoms associated with Lyme disease return. It’s a vicious cycle.
MacGregor knows exactly how she contracted the disease. She was bitten by a tick in 1994 when she lived in the Okanagan. Her physician told her the bullseye bite mark was from a spider but three weeks later she became violently ill. Eventually she got better, but never fully recovered from the flu-like symptoms, and a year later she was told she had fibromyalgia.
“Everything was blamed on fibromyalgia,” she said.
It wasn’t until she travelled to Hope B.C. to the Dr. E. Murakami Centre for Lyme that she was properly diagnosed, a diagnosis that was confirmed later by a doctor in New York.
One of the biggest problems associated with Lyme disease is the difficultly diagnosing it. Another significant problem is convincing the provincial government that Lyme disease is in Alberta, and can be contracted in Alberta, perhaps not only by ticks.
Sherry Drew, organizer of this year’s Wall of Hope, says too often Alberta doctors don’t test patients for Lyme disease because the government is telling them it doesn’t exist in Alberta. That often leads to improper diagnoses.
She says at least four people in Lethbridge have the disease, and they contracted it in the province. But if there supposedly aren’t any ticks in Alberta that carry the disease — according to the government — they must be getting it from some other animal or insect, so Drew urges the government or some other organization to pony up some money for more research.
Saturday’s Wall of Hope is the third such event the group has organized. The group held its first rally in Ottawa two years ago, and last year it was held in Winnipeg. People suffering from Lyme disease, and their supporters, form a wall by standing shoulder to shoulder to show they are not alone. They also offer a minute of silence, then walk around with signs and talk to people about the disease.
And they hope governments one day get the message.
“We need Ottawa to take this seriously,” Drew said.
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