TARLOV CYSTS - Canada the misinformed!!!

The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care. Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients. Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey. Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.

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Tuesday, June 5, 2012

Societal Impact On Pain




"The Societal Impact of Pain in Europe" - 

Friday, 23 September, 2011
The World is slowly getting there. We're learning about patient realities, now if only we could get our governments and disagreeing medical professionals on board.

The Video above was for Europe,
The Video below was for Canada

COMING SOON!!

"The Canadian Pain Summit in Ottawa, ON"
April, 2012

Thursday, May 31, 2012

Health Cuts Threaten Chronic Pain Clinics

As if we don't already have enough problems!!!!

Tarlov Cyst Patients across the Country have been fighting for Out of Country Care for many years, and while we still haven't gotten far in our effort for change, and increased options for relief we're forced once again by the McGuinty Government and Deb Matthews, Ontario's Minister of Health, to accept even more cuts to the only solution we have left?

Now they're targeting Pain Clinics and our chance at living a somewhat, normal life.

According to Simcoe.Com, an article written by  Chris Giorshev, MD Tariff Chair, OMA Section on Chronic Pain Medical Director, The Simcoe Clinic, Chronic Pain Care "Chronic pain clinics in Ontario may be forced to close due to new government fee cuts.  Patients will be abandoned and healthcare costs will rise. This is bad news for everyone. Chronic pain in Ontario is a serious problem." 

In addition, the letter states these changes will affect 15-19 % of the population making chronic pain more common than asthma and diabetes. He believes the consequences can be devastating when you add the increased rates of suicides and depression that chronic pain patients suffer.

According to the May 24th letter, "Canadian, workplace costs associated with chronic pain cost the system more than $37 billion per year and their healthcare costs are staggering at over $7 billion per year.  Fortunately chronic pain clinics exist to address these issues."


Please visit the article at the above link to read this letter in full.
Tarlov Cyst Disease patients are but a few of the rare disease, and chronic pain sufferers that will be affected by this massive round of cuts. So as Chris Giorshev says in his letter to Simcoe.Com, please do what you can to let the government know that chronic pain patients deserve to be treated properly.  
Contact your MPP. It’s in everyone’s best interest. 




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