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, November 7, 2013

Brampton woman struggles with multiple rare diseases - A story about me, not written by me.


I've been writing about my rare disease since I was first diagnosed in 2010, but for the first time ever, someone else wrote a story about me and the rare diseases and limitations I live with.

It will be four years this January since this nightmare began, and since I was injured in the January 2010 motor vehicle accident, I've received almost no support from the Insurance company I'd been paying, with no claims, for years.

The insurance company repeatedly claimed that the accident itself had nothing to do with my suffering, but I believe it's more than a little difficult to deny when pre-MVA I was mobile, independent and working hard towards achieving my dreams after graduating with high honours from an intense and demanding, Broadcast Journalism program at Sheridan College School of Arts and Design.

These diseases and symptoms can make anyone feel like their body's become their prison. The pain levels from these diagnoses give new meaning to what Doctors refer to as -ten out of ten-. It's a constant, never-ending pain that's very difficult to control.

I personally went from walking independently to relying on an expensive and unique electric wheelchair that's been built to relieve my pain, improve independence and extend my mobility. But without wheelchair accessibility built into my world, then the chair and I become prisoners, thanks to insurance claim denials.

I live in the Country, in a little town between two cities, without public transport. My chair can't be lifted into a car trunk or travel freely in snow or rain. Without a wheelchair-accessible vehicle, I cannot use it as we'd hoped.

For the first time since this journey began, I've lost feeling in one of my legs. My Doctors tell me to go to the Hospital, but without the chair, it's an uneasy task, so I'll put it off until tomorrow, which is the third day since the loss of feeling first hit.

Right now, with this loss of feeling in my leg, I'm reminded of how urgent it is to change my world to include wheelchair accessibility, and I hope you'll take part in helping me receive what I need.

I hope you will do what you can to assist with the purchase of the wheelchair-accessible van I need, which is one of the most important things that the insurance denied.

To donate to;
 "Funds for Freedom" 
 please visit; 
http://www.gofundme.com/4onw04

To donate through bank email transfers (e-transfer) please forward to 

sherri.jones@live.ca 

Please read the attached article written and shared through The Brampton Guardian, a community newspaper.

https://www.bramptonguardian.com/life/updated-brampton-woman-struggles-with-multiple-rare-diseases/article_9c115571-ac9b-58bd-b1be-1142dd8dfce4.html?


In the article, you'll learn more about these diseases' effects and the challenges patients face when diagnosed.

Thank you for your support.

Sincerely,
Sherri
sherri.jones@live.ca


Thursday, July 11, 2013

Meet The Doctor Who Thinks We've Got America's Biggest Health Problem Backward!

Once in awhile I come across stories of exemplary courage. Stories I like to share with the hope it will make us think, make us question and encourage, or at least make us consider how we can take part in motivating change capable of eliminating suffering.

I know there's never any straight or simple answers. I know we all have a bias of one kind or another, but I also know that arrogance can be humanities most dangerous trait. It can change or end lives. It can cause unnecessary suffering and it can all too often add insult to injury.

I'm thrilled to share this TedTalk with you, just like it was shared with me by another compassionate rare disease patient.

I hope this talk encourages your to step back and question your own bias and assumptions. I hope it motivates you, just like its motivated me to step back and reconsider my own beliefs that keep me bound in a box while I point fingers and lay blame.

The following quote comes from this amazing TedTalk. It's the words that hit me the hardest, but also reminded me that we're all capable if making changes that could indeed change our own worlds, and the worlds of others now, and in future.


“go back to our original ideals; open mind, the courage to throw out yesterdays ideals when they don’t appear to be working, and understanding that scientific truth isn’t final, but constantly evolving.  Staying true to that path will be better for our patients, and better for science.”
 ~~ Doctor Peter Attia

I'd love to know what you take away from this TedTalk... Share your thoughts through comments!

Enjoy!



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