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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Friday, March 2, 2012

Please Support the Canadian, National Pain Strategy!!

Canaday Day
2011
"Without my pain management this would have never been possible. 
With pain management almost anything is possible!!"




Dear Family and Friends,

I am writing this email today to personally ask for your support. 

The Canadian Pain Coalition is working towards a National Pain Strategy to address the issues faced by Pain Sufferers across our great and beautiful Country.

I am sending this request as one of Canada’s millions who suffer excruciating amounts of pain, on a daily basis. My own personal diagnosis of Symptomatic Tarlov Cyst Disease, a rare and not easily treatable spinal cord disease, leaves thousands of patients around the Country and the World suffering with no end in sight. Many illnesses still lack treatment options and Symptomatic Tarlov Cyst Disease is just one of the many falling into that category, within Canada.

To date, there has been NO National Pain Strategy in place to assist Medical Practitioners with treating patients who suffer temporary, ongoing severe and extreme amounts of pain. This missing piece of the pain management puzzle is leaving too many patients with absolutely NO pain management to assist in their struggle to live productive, meaningful lives. 


Without this National Pain Strategy too many patients, including myself, are left to live their lives with severely limited mobility, or no mobility at all!

As Canadians learn daily through personal experience, main stream media, or social media about the ever-increasing challenges facing Canada’s Healthcare System, the importance of Pain Management increases and MUST remain in the forefront if Canada is to continue to support Rare Disease, untreatable diseases and Chronic Pain Canadians in need. With the current limited and quickly decreasing access to Provincially funded, Out of Country Care, treatment options disappear for many, leaving far too many patients, such as myself, with nothing more than a life of constant, unrelenting pain.


PLEASE support the Canadian Pain Coalition efforts to maintain hope, and a brighter future for all of Canada’s Pain Sufferers. Please read the below email and pass it along as much as possible. 

This is for all Canadians; for all we love.

Please visit: www.canadianpainsummit.ca and show your support by endorsing the Canadian Pain Strategy petition today!

My family, and I thank you.......

Sincerely,

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