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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Tuesday, April 26, 2011

Canadian Issues.... I love witnessing Canadian Courage!! (Click here for Sue's Blog)

I started this blog was with the hope of addressing specific failures of our Canadian Provincial and Federal institutions. 

Over time it's obviously taken on most of the major issues that are affecting me personally; more specifically Tarlov Cysts. I've addressed the symptoms, treatment options, lack of treatment options, lack of professional medical understanding, side effects and causes. 

I am very proud of what this blog has become and how this information has been reviewed by people from all over the world. 

To everyone out there... the readers from Malaysia, Korea, Switzerland, China, Argentina; I welcome you all and I hope that you have found something here that you can use. I do welcome you to email me and tell me about yourself and why you came to this site, over and over again. I would love to know you and how I can help you, perhaps with more specific information to your personal situation. Comments are always welcome and all emails will be responded too in a timely manner.



Even though this site may be more specific to Canadian realities, many of the issues are universally transferable. Unfortunately, the issues we Canadians face, are many of the same issues experienced in different parts of the world. Distance never breaks the bond of humanity. We are all human, we are all fragile beings and we are all capable of learning, advancing and fighting for what we need. As Marshall McLuhan said oh so long ago, we are indeed a Global Village. 


And I quote:
"Today, after more than a century of electric technology, we have extended our central nervous system itself in a global embrace, abolishing both space and time as far as our planet is concerned."
- Marshall McLuhan, Understanding Media, 1964.
 
I have added an additional link to the blog this morning.... why? Because as I said we have the ability to learn from each other and most things are indeed transferable. The blog, I've added is called 'Sue's Blog'. It is a blog I truly enjoy reading. 

I love her writing style, her direct, but honest flippancy when addressing today's major and serious issues. Most of all I respect her courage to make her thoughts known and for her honesty in the face of so much deception. I hope you visit her site and take the time to read some of the posts she has taken the time to share. There is always more to learn and you never know, she just might have something valuable there that you can use.
This Blog, The Canadian Living Blog, will eventually become a website to allow for what I see as a growing and extensive data base of information.  I hope you will keep coming back and take the time to review the links. There is a lot of help out their to help you face your issues for what they truly are, and there are many resources, including this one, aimed at helping you to advocate for your own right to a safe and healthy life.

Thanks for reading and come back often I have much more information coming up soon..... stay tuned..... what's next may be exactly what you have been looking for. 

Sherri




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2 comments:

  1. Sue Kelland-DyerApril 26, 2011 at 3:33 PM

    Thank you Sherri for your kind comments - and I thank you for the link. I am going to take more time to read posts of others - starting here.

    It is indeed a very great opportunity to communicate with people everywhere - and I am determined to learn something new everyday.

    That is living - and bringing us together as people - which is what all this is about.

    Let me extend a hand of friendship from Newfoundland and Labrador to Ontario.

    Let us communicate openly, debate fairly, resolve frequently, share constantly, and move toward greater learning everyday.

    Sue

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  2. Sherri JonesApril 26, 2011 at 10:49 PM

    Hi Sue, thank you for taking the time to respond to my post.

    I too am from Newfoundland, Corner Brook actually, and as I said I truly appreciate your courage for encouraging conversation on tough issues.

    As you can see from this blog, we too are facing some tough issues and I am constantly fighting to improve education and accessibility to information that is not always easy to find.

    The battle we face in Ontario with our Rare Diagnosis is not limited to Ontario, or even Canada. So please, if you can I would appreciate it if you could spread the word that this information is here and available.

    If there is anyway Ontario patients can support Newfoundland Tarlov Cyst patients we would be happy to do so.

    All the best and I look forward to reading more on your blog. Keep up the great work!
    Sincerely,
    Sherri

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