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Monday, May 13, 2013

World Lyme Day Celebrations: Victoria BC

May 11th was the first international World Lyme Day Celebration! There were rallies in over 25 countries, including Victoria, BC (we're the capital of the province!). There were so many people there, who'd come from as far away as the interior BC just to be at this event. It was so amazing to meet all the Lymies (people with Lyme) that'd I'd only ever communicated with electronically! Elizabeth May, Lana Popham, Murray Rankin, and David Cubberly spoke about the changes their trying to create, and Emily (who's dad is very sick), Avery & Shannon(mother/daughter), and I spoke about how Lyme impacted our lives, and about having Lyme disease in Canada. Many other patients got to share their stories, poems and was a very cool experience for us all. 
Lyme Disease patients, and their friends and family
There was such a positive energy running through the feels like we are all coming together to create positive change, which is so cool! Here's my speech, below:

Thank you so much for being here today. When I realized I was too sick to walk, I thought I’d be in a wheelchair for a few weeks, until we figured out my ‘mystery illness’. 5 years of therapy later, I’m still rolling along. Breathing problems and increased headaches began in grade 8, escalating gradually ’til in 2008 I began feeling fatigued, and experiencing worsening joint pain, nausea, confusion, memory problems and all over body pain. We made the rounds to the offices of many specialists, none of whom could figure out why I went from being a healthy, active teenager to a girl barely able to walk or function. I was tested and retested for what felt like everything. In desperation, my mum researched what could possibly be ailing me. Turns out I had most of the classic symptoms of Lyme disease, and yet each doctor we went to assured us I couldn’t have Lyme.  Like so many other Canadians, I had a negative test result, which for my physicians completely ruled out Lyme disease. Versus making a clinical diagnosis, most doctors rely on a flawed lab test to diagnose Lyme disease. As a direct result of this failure to diagnose me, I’ve been fighting for my life for the past 5 years. If someone is diagnosed and treated immediately, just a few weeks of antibiotics should see them returned to health. Sadly, my story is like thousands of others across the country, who trusted the medical system to get to the bottom of what was ailing us, and were let down. I was one of the lucky ones who was able to seek the guidance of four leading experts in the US. Our family home was sold, bank accounts and lifesavings drained. Friends, family and strangers donated at fundraisers in order to fund my treatment outside the country, which isn’t covered by our provincial health care plan. To this day I still have no diagnosis in Canada, and I continue to be treated in the US.

I spoke and attended the 2009 rally on these same steps. I can’t help asking myself what’s changed in 4 years? When  first became ill, most people we met had no idea what ‘Lyme Disease’ was. Now when we meet people, most everyone has heard of Lyme disease, even if they didn’t know it could be so debilitating. This broader awareness is thanks to us; the patients and their families and friends, the reporters who’ve featured stories of the lives changed by this infection, the politics surrounding it and the politicians fighting for change, like those here today. 

When I found out I had Lyme Disease in 2008, I made myself a promise that I would do everything in my power to prevent other people from having to go through what I did. 
I envision a day when the diagnosis of Lyme Disease evolves to the point that a patient with a tick bite would be preemptively treated, instead of being told it was probably a spider bite, or to come back if they developed symptoms. 
I envision a day when doctors receive the education critical to clinically diagnose Lyme Disease, versus relying on the flawed testing available in Canada. 
I envision a day when doctors are free to treat patients as they see fit, and not be limited by outdated treatment “guidelines”. We have seen too many doctors driven out of practice.
 I envision a day when Lyme Disease would be explored as a possible diagnosis long before the patient was left with a ‘mystery disease’ label. 

What Lyme patients need now is compassion and assistance, not dismissal and denial. There is an opportunity, with the National Lyme Disease Strategy Bill, for medical professionals, patients, and advocates to have a crucial conversation, address issues and formulate concrete solutions. I am asking our elected officials to debate this issue and begin creating solutions that would benefit all Canadians. We patients are too sick to create these changes on our own, and we need your help. 

I imagine a time when a simple, reliable test and effective treatment for Lyme Disease will be available for all Canadians. I envision a future where Lyme disease is no big deal, and never allowed to become a chronic, debilitating infection, as has happened to so many. 

The future of Lyme disease and tick borne infections in Canada is at a turning point. Behind us, we have decades of suffering and a lack of knowledge. Ahead of us, global warming and human encroachment of wildlife habitat will lead to an explosion of ticks and Lyme disease outbreaks. 

We’ve got a lot of work to do, and a mission to drive us and hope to keep fighting for. Let’s get started! ~

May is Lyme Disease awareness month, and ticks are in the nymphal stage at the moment, and are very small, and almost impossible to see when they are on your body (or biting you). This is the time to investigate natural bug repellants (I use TickTock's tick repellant), to tuck your pants into your socks (I sexy!) and to wear light colored clothing when you're outside. Stay away from tall grass, keep to the middle of the path, and check your pets, yourself and kids for ticks regularly!

We are going to Ottawa later in the month to speak to as many MP's (Members of Congressmen, for you Americans) as possible about supporting Elizabeth May's Lyme Disease Strategy Bill. It's going to be a very busy few weeks, but I'm excited about this opportunity. Most of my extended family lives in Ontario, so we will be visiting with them too. Yay!

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