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

UPDATED: Brampton woman struggles with multiple rare diseases

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

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!

This Monster Inside of Me, by MJ

This monster inside me laying in wait 

for the slightest 

excuse to flare, 

explodes with gut wrenching lashes of pain, 

no sympathy to spare. 

You can stroke it, pamper it, 

submit to its blackmailing greed, 

but no matterhow careful, 

I cannot appease it; I cannot be freed.

This monster inside of me trapped in his cage. 

All over my body he takes his rage.

Lost in the fog from morning til night

It's hard not to be consumed with fright.

This monster inside, doing its best to cripple,

somedays it takes no more than a ripple.

Because he is hidden no one believes

This monster inside of me makes me grieve.

- MJ

A New Research Study: “A genetic analysis of patients with Tarlov cysts”.

DR. KEIRAN MURPHY IS NO LONGER ACCEPTING APPLICATIONS 

FOR THIS RESEARCH PROJECT 

FINAL RESULTS SHOULD BE AVAILABLE BY THE END OF FEBRUARY 2014

IF YOU ARE A PATIENT, WITH QUESTIONS PLEASE EMAIL;

s.jones@tarlovcystsociety.com

March of 2013 marked the three-year anniversary of my introduction to the world of Rare Disease.

It was March of 2010, three months after a Motor Vehicle Accident triggered excruciating pain when my first MRI’s were ordered. Within days I was introduced to the rare disease known as Tarlov Cyst Disease.

Before the accident I’d been living with some occasional, and other longstanding symptoms explained only by the unique set of symptoms that appeared at any given time. When the diagnosis of Fibromyalgia was added to the list in 2005 it became the catchall for every old or new, pain and symptom.

I’d grown accustomed to some of my health issues and accepted them as a normal part of life, but thanks to two MRI’s and several informed and experienced specialists I finally discovered that what I suffered from was far from normal.

The symptoms and insurmountable pain that accompanied my post-accident problems could only be described as living through a nightmare full of pain, fear, anger and confusion. I watched the life I knew quickly slip away while a new pain filled, devastating, but determined and inquisitive life began. 

I will always consider myself to be blessed. Not because I’m ill, or because I can research or write, but because everything I’ve needed, short of an all encompassing solution, has found its way into my life, providing the things I needed at the appropriate stage or time.

I started writing my blog shortly after diagnosis while searching for answers and others like myself. Since the beginning of the blog I’ve met hundreds, or perhaps even thousands of people living with many of the same symptoms and fears I know only too well. My blog allowed many newly diagnosed patients to find out more about their diagnosis and its helped guide patients to other patients and to some of the few specialists who offered care. Some assistance was minimally invasive, while others were informative, but the blog began to show the world how large our little Tarlov World had become.

Unfortunately the number of Canadians diagnosed with this disease has grown in numbers, and our little Tarlov Cyst Society continues to grow with it. Our society has grown from none in the beginning, to at least one Tarlov Cyst patient in every Province across the Country.  Some Canadians found connection through this blog, others through some of the many support groups formed by patient advocates around the world.

For some reason the highest population of Tarlov Cyst patients in Canada live within the Province of Ontario, which for the following announcement is certainly a benefit to Canadians and all Tarlov Cyst Disease Patients around the world.

Most patients already know there was a research grant announcement on The Tarlov Cyst Disease Foundation Website in July 2012.

That information has buzzed on the support groups, been wondered about by patients, and prayed for by all. It announcement informed us of a one-year Tarlov Cyst research grant had been funded by the Tarlov Cyst Disease Foundation. The one year grant has been implemented for the Foundation by NORD (National Organization for Rare Disorders).

The grant recipients were:

Principal Investigator: Kieran Murphy, MB, BCh, FRCPC, FSIR

Professor & Vice Chair, Medical Imaging
Deputy Chief, Medical Imaging, University Health Network,Mt Sinai Womens' Hospital
Director, International Medical affairs, University Health Network, Toronto Western Hospital
University of Toronto, Ontario, Canada


In addition to this announcement I’ve been authorized to inform Tarlov Cyst Disease patients within, Ontario, Canada, that they are invited to take part in the following study;

“A genetic analysis of patients with Tarlov cysts”

The study is led by Dr. Kieran Murphy at Toronto Western Hospital.  

The purpose of the study is to determine whether or not there is a relationship between Tarlov cysts and three connective tissue syndromes, (Marfan, Loeys-Dietz and Ehlers-Danlos syndromes).

Participants will be assessed by a clinical geneticist who will determine any features associated with these syndromes.  Those participants who show one or more features will go on to have genetic testing of those genes associated with the three connective tissue syndromes (a blood sample will be taken). The appointment will take approximately 2 hours.

If you, or anyone you know are interested in taking part in this study please contact 

Abby Skanda - askanda@uhnresearch.ca 

 the study coordinator who will contact you directly. 

This is an exciting time for Tarlov Cyst Disease Patients within Ontario, Canada and around the world. For the first time in Canada researchers will be searching for answers to some of the many questions on the minds of every patient, family member or friend of a person diagnosed with this dreadful disease.

Please come forward, let your pain and suffering help Dr. Murphy and his staff find the answers we all need.

This is for me, my TC Cysters, our families and for the many generations to come.

With love to all!

Sherri Jones

Please forward all information and inquiries to; 
Abby Skanda  - askanda@uhnresearch.ca