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

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