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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Monday, June 18, 2012

For Americans in Pain please support this US Petition: First Do No Harm: The DEA targets Physicians who treat their patients pain.

Canadian chronic pain sufferers aren't the only ones suffering from the new, and often excessive prescription controls that are currently threatening Physician interest, or willingness to provide proper pain management to those in need. According to Science Daily the US is also following suit; or perhaps we're following them?  

Either way, pain management for patients living with multiple levels of chronic pain are being attacked by Government policies in an attempt to crack down on illegal drug use by way of prescription drugs. 


As a chronic pain sufferer this is definitely the last thing I, or anyone suffering the tortures of painful, often untreatable disease needs. Not only are we forced to suffer from horrendously painful diseases that no one seems capable of explaining or understanding, but now the only recourse left to us is being monitored to the point of fostering fear of recrimination, or undue stress leaving many Physicians to wonder if the possible impact is worth the effort. 


In too many cases patients in need of pain management already suffer through improper care due to personal attacks by being tagged as "druggies, or "addicts" looking for a fix! In addition, many chronic pain patients are tagged as "hypochondriacs" suffering from psychiatric illness and the recent increased prescription oversight is now adding to what was already a challenging issue. With these types of barriers where are legitimate chronic pain sufferers to turn? If neither Doctors or emergency rooms are willing to provide what the patient actually needs, where are pain sufferers to turn? What are we to do with this debilitating pain we're forced to live with? 


I have personally witnessed what addiction can do to a persons life, not to mention the effects the addiction has on the lives of those around them. Through experience I can certainly understand the need for some control, but where do we draw the line? Where is the accountability to the Physicians whose loss of professional ethics encouraged and allowed access to these highly addictive prescription medications? Who should actually be paying the price for these mistakes? I may not know that answer, there's certainly still work to be done, but to allow the chronic pain sufferer to suffer more than they already do is definitely the wrong way to go.


So please, sign the petition and add your name to the growing list of citizens who already signed thanks to their understanding of the issues. Please support chronic pain sufferers in their fight for fairness.

Petition 2 Congress: First Do No Harm

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

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