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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Thursday, October 13, 2011

Dr. Roland Wong Information and Tarlov Cyst Survey Link

Dr. Roland Wong - Tarlov Cyst Research (Click Here For Link)

A few days ago I wrote about Dr. Roland Wong, and the hearing he’s facing with the College of Physicians and Surgeons of Ontario. 

Some people, including me, wanted to know more about his connection to Tarlov Cysts and what he was actually hoping to accomplish. Those answers can now be answered by visiting the above link.

The link  will bring you to a page on the Tarlov Cyst Association website where you will find a full explanation of the survey.

Dr. Wong had completed a 2003 Survey and the answers it provides can be found by clinking on the 2003 Survey Results link on that page. There you will find out what he'd hoped to achieve, the results of the 2003 survey, and how the survey is being continued with the hope of gathering more information from a broader range of test subjects. He is now seeking information from both Tarlov patients and non-patient subjects.

The original 2003 Survey was only completed by two European patients,which proves to me and I'm sure many of you that this survey has not reached a wide enough audience.To gather more accurate data Dr. Wong has expanded the survey and now I ask on behalf of Tarlov Cyst patients everywhere, please spread the news of this survey and support Dr. Wong in his attempt to gather more accurate information, which would create more accurate results.

Please visit the site, complete the new survey and pass the link and survey information on to all Tarlov patients you know. By helping Dr. Wong collect this information, you are helping deliver a more accurate picture of Tarlov Cyst patient barriers, experiences and the attention required to address this Disease.


As I stated before, the more information that's gathered on Tarlov Cysts and patient experiences, the more attention this will bring to the suffering experienced by Tarlov patients, and families from around the world.


We all have a story.... please share yours.


Thanks,
Sherri

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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