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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Sunday, August 5, 2012

Tarlov Cyst Disease International: Patient Map

LINK TO: TCD International: Patient Map


Tarlov Cyst Disease International: Patient MapIn recent years Tarlov Cyst Disease patients have connected on an International level allowing access to new and older information for "new" or "experienced" patients.

Our Goal?

To ensure quick and easy access to the growing International Tarlov Cyst Disease, Peer Support Networks.

This Map is, and will forever be, under construction.

As new patients are diagnosed we hope to add their names, information and International locations.

The development of this Map is aimed at showing how many of us are out here, and that maybe this rare disease is in-fact not actually that rare, but instead a misunderstood and commonly misdiagnosed Disease.

We welcome all Diagnosed Patients to share their location, diagnosis specifics, age, photo's or any other information you feel best describes how a diagnosis of Tarlov Cyst Disease has effected your life.

We look forward to meeting you, helping you access any and all Peer Support Groups or Programs available and also adding your name and information to the Map that will speak through image, what some too easily deny.
Please feel free to contact; 

Sherri Jones or Sharon Jones-Gillece
tarlov.canada@gmail.com

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