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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Wednesday, October 5, 2011

Why Don't Physicians Care Enough? If they do this is what happens!! Tarlov Patients, you'll know this name...



The College of Physicians and Surgeons of Ontario


Discipline Hearings or Matters to be Spoken
RE: Dr. Roland Wong

__________________________
Effective October 4, 2011

Doctor Dr. Rowland Wong


Date October 3rd, 2011 - Motion


October 17-21 2011 - Hearing

Summary of Allegations
*Failed to maintain the standard of practice of 
*Engaged in an act or omission relevant to the
  practice of medicine that, having regard to all the circumstances,   

  would reasonably be Hearing    
  considered by members as disgraceful, dishonorable, or  
  unprofessional.
*Incompetence






Hearings begin on Ford complaint against anti-poverty doctor
Toronto Mayor Rob Ford thinks doctors and others in the “medical field” should not be advocates for the poor, even though the social determinants of health are a key factor in an individual’s wellness.

On Monday Ford’s complaint against such a doctor went forward at the College of Physicians and Surgeons of Ontario (CPSO).
Ford complained to the professional college about Dr. Roland Wong, who by his own admission helped people on social assistance fill out more than 15,000 forms to access the now cancelled special diet program.
In a memo sent out to activists, Health4All states “we cannot accept the bullying of doctors who advocate for the poor. We need to let the CPSO know that poor people, and their allies, including those in health care, will not stay home when one of our community members comes under attack.”
According to the Canadian Medical Association Journal (CMAJ), Wong insists he never acted improperly or illegally in assisting social assistant recipients with the forms. In addition to signing the special diet forms for his own patients, Wong also assisted others attending special clinics organized by poverty advocates.
The special diet provided additional social assistance benefits of up to $250 per month to allow individuals to buy healthy food because of their medical condition. The Liberals cancelled the benefit after costs increased from $6 million in 2001/02 to $220 million in 2009/10, a move doctors have called short-sighted.
This is not the first time Ford has tried to silence critics by suggesting they have no right to speak out on important issues. Ford supporters questioned Margaret Atwood’s right to speak out about proposed cuts to the city’s libraries. Councillor Doug Ford, the Mayor’s brother, suggested to the Toronto Star that she should get elected or pipe down.
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Sunday, August 14, 2011

Are you Canadian? Have you been diagnosed with Tarlov Cyts Disease?

I'm sure you can see from this blog that most of what I write about is Tarlov Cyst Disease. 

Since this blog began, most responses to entries and views on the stat-counter are from Tarlov Patients, Medical Clinics, Physicians, Hospitals, Journalists and Writers from around the world.

Canadian Citizen Daily Battles
is looking
for

Canadian Tarlov Cyst Patients
Symptomatic and/or Non-Symptomatic

I am looking to find as many Canadian Tarlov Cyst Disease sufferers as possible to build a database of issues, experiences and references, enabling us to learn from each other and support each other through the many individual problems facing Canadians across Canada. 

I know through research that there have been a minimum of 17 Ontario WSIB Cases, and I couldn't even guess how many other Tarlov patients there are out there, unaware that Tarlov Cysts may be the one thing causing the many back and Neurological problems they are experiencing. 

Many different forms of Trauma-related injuries, including slips and falls, motor vehicle accidents, work-related injuries and many other forms of injury, bring on most symptomatic Tarlov Cysts.

It seems that the "Rare" part of Tarlov Cyst Disease perhaps isn't as rare as I, or any of us, may have thought initially. There are many more cases in Canada than any Canadian patient has been led to believe. It's time to reach out and say, "Hello"! 


I'm now publicly reaching out to every 
Tarlov Cyst Patient I can find living within Canada.
 The aim is to learn from each other. 
Learn your stories, find out about your Journey, 
the benefits and the barriers provided by our 
Municipal, Provincial and Federal Service Providers
and our Provincially managed 
Canadian Medical and Legal Systems.

Please create a new email, with a pen name if you need to protect your identity. 

All confidentiality will be maintained, and your name, and story will not be shared until you choose to do so, but I would need to be able to add your information to your Province list, which would include the following; 

  • diagnosis details
  • diagnosis date
  • a short, personal statement written by you, providing basic information of your personal experience.

I am hoping to bring together ALL Canadians in the fight for recognition of this "rare" but devastating Disease. 

I'm confident we all have skills, experience and information, either past or present, that may be able to assist others with their fights with Physicians for care and Neurological Communities in our push for acknowledgement and understanding. 

We must educate Compensation Boards and Insurance Companies to protect valid Legal Claims for justified and entitled rights for trauma victims across Canada.

Together, we are stronger; Together we are no longer alone.

Please email 
Sherri Jones at:

sherri.jones@live.ca 

 I will get back to you through email as soon as possible.

ALL CONFIDENTIALITY WILL BE RESPECTED UNTIL INFORMATION RELEASES APPROVED.

Thank you for your time....I  look forward to hearing from you!!!!

Sincerely, 
Sherri L. Jones

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