Some journeys are personal, some journeys aren't. This is a Canadian journey to be shared with the hope of learning, helping and educating others along the way.
I'm an open book..... I hope you enjoy the read.
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.
Tarlov Cyst Disease (TCD) is how this blogging journey began in 2010. These three words have a huge meaning that wasn't too hard to spell when you consider they're explaining a rare disease that comes with a lot of pain and significant changes to the lives of those who live with these often tiny, occasionally massive spinal cord cysts.
What is a Tarlov Cyst?
According to Orphanet Canada, it's more commonly known as a Perineural Cyst, with a disease definition of:
A disorder that is characterized by the presence of cerebrospinal fluid-filled nerve root cysts most commonly found at the sacral level of the spine, although they can be found in any section of the spine, which can cause progressively painful radiculopathy.
According to Canadian patients within the Tarlov Cyst Society of Canada, these cysts are torture and almost impossible to manage once they become symptomatic. In contrast, most Canadian medical practitioners believe them to be nothing more than incidental findings of little to no clinical significance. This belief is based on disproven and outdated medical research that has left nothing but pain in its wake as patients' lives fall apart while the medical community argues over who's right and who's wrong.
This written and verbal confusion creates even more chaos and devastation in patient outcomes. In this day and age, everyone knows how to use Google, but apparently not doctors. These confusing messages often result in intimate partner and/or marriage breakdown, which can permanently damage the entire family that can reach out for generations.
Symptomatic Tarlov Cysts are known to cause a type of pain known as 'Intractable Pain,' which is described as;
Intractable pain (also known as Intractable Pain Syndrome/IPS) is a severe, constant, relentless and debilitating pain that is not curable by any known means and which causes a house-bound or bed-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures.
Unfortunately, the mismanagement and misunderstandings created by the opioid epidemic have created a growing list of lost lives due to suicide while also putting the lives of many Tarlov Cyst Disease patients at risk daily.
Then there's the genetic relationship between Tarlov Cyst Disease and other known, or perhaps unknown conditions, such as Chari Malformation, Connective Tissue Disorders like hypermobile Ehlers-Danlos Syndrome (hEDS), Marfan's and Loey's Dietz Syndrome (LDS).
Then there's the long list of comorbidities, such as,
Hypermobile Ehlers-Danlos Syndrome (hEDS) and any other connective tissue disorder (CTD)
(This list is by no means exhaustive. If you'd like to add more information to this list, please email me at sherri.jones@live.ca with recommendations and any reputable, published journal information that can support your claim.)
The lives of patients with Symptomatic Tarlov Cyst Disease are always at risk due to the ongoing assignment of the terms of; drug seeker, hypochondriac, and mentally ill. When these tags are attached to a patient file, this often results in medical professionals dismissing all invisible or unique health complaints, which could be caused by other more common and apparent diseases such as different types of cancers, diabetes, and heart conditions.
The challenges the Tarlov Cyst Disease patient group faces are enormous and developing as patients age, and prove that the life of this disease can be, and often is, degenerative. Research is required to monitor the development of this condition as people age, aiming to provide deeper information to all patients diagnosed with this disease. This could assist in the decision-making process of what treatments work, what treatments cause harm, and which treatments could be developed to aid in managing this complex and still not well-known disease.
The attached video was by posted in an Irish Journal and tells the story of Rei Haycraft; A woman living with the effects of an Invisible Disease known as Ehler Danlos Syndrome (EDS).
EDS is one of over 7000 known Rare Diseases, and only one of multiple Connective Tissue Disorders, which can have hundreds, or even thousands of physical presentations.
The storyteller, Rei Haycraft tells her own personal story of how often invisible diseases are ignored, undiagnosed and misunderstood by the medical profession and also society in general. This story explains, very well, how dangerous this ignorance can be to patients and their genetically related family members.
Canada is no different.
Rei wrote on her Youtube page, “I have Ehlers Danlos Syndrome, and this is my story. Please share this video to anyone who lives with EDS or knows someone affected by it. Together, we can raise awareness, understanding, and support.”
Rei is so very right about the urgent need to share her story and this information, but as someone who lives with my own list of Invisible Rare Diseases I believe this video should be seen by everyone, not just EDS Patients, or people with EDS symptoms.
Why? Because Rei’s story could also be the story of millions of other patients living with thousands of other Invisible Rare Diseases anywhere, and everywhere, around the world.
Persons with any form of Invisible Rare Disease are often ignored, treated like hypochondriacs in need of counselling and anti-depressants to manage what Doctors believe to be a, “physical manifestation of a mental health problem”.
Being properly diagnosed with Rare Disease anywhere can take weeks, months, years, or in many cases, a lifetime. How can we change that?
I believe it all starts with frontline medical staff. Medical practitioners of all specialties need to care enough to look past their tight time frames and personal judgments. They need to take the time to actually see and hear the patient sitting before them who’re suffering from a list of pain and symptoms that to the Doctor or Nurse makes absolutely no sense.
Think of it this way. You’re the Doctor; you’re the one with medical training and years of hands on experience, but with all of that to support you, you still can’t make any sense of this patients complaints or symptoms.
Most patients aren’t Doctors or Nurses; we have no medical training or patient treatment experience, but what we do have is a long list of symptoms, that if taken into consideration, might actually amount to something you never would, or could have considered.
If you can’t immediately find the cause for your patients suffering, please at least hesitate before tagging us as hypochondriacs. Instead, why not take advantage of our far-reaching Internet? That’s what computer savvy patients do. Why can’t Doctors?
We use the Internet to play games, meet people, share thoughts and ideas, and even to keep up to date on what our friends had for dinner, but are we actually making use of its ability to help save lives?
Unbeknownst to the majority of Canadians, and yes, even medical professionals; The Canadian Federal Government offers its citizens a new, unique and very welcome gift. It’s the gift of open access to International Research and understanding of Rare, or otherwise known as Orphan Disease.
Orphanet Canada is a launch site that brings the user to a long standing, highly respected European Orphan Disease Database. This website can help Medical practitioners review symptomatology and help them understand what these symptoms “might,” mean. Orphanet Canada provides links and contact information to specialists in almost every rare disease category or diagnosis. If you can’t find a specialist within reach, why not call on those all so important specialists, who’re all too often overlooked. Call a local Geneticist!
Geneticists can answer a wide range of Rare Disease questions, but unfortunately, within Canada we’re a little short on genetic services due to a lack of required funding. The Geneticists we do have are often overlooked, overbooked and understaffed, but they’ll still answer your call and do their best to help your patient.
We’re all aware that there’s only so many donor dollars to go around, and very limited funding supports Genetics. This leaves us without easy access to those who could help save millions of dollars in healthcare spending by getting to the point in a much shorter period of time. This gap in services leaves far too many Rare Disease Patients in what can come to feel like a never-ending void of agony, anger and frustration.
Fundraising is done, for the most part, to take on one specific challenge at a time. It’s used to discover causes, effects and solutions for the disease being funded, but what about the genetic services we’re in need of everyday? Where do the Doctors of possible Rare Disease Patients turn for answers?
Wait times, deadlines and a never ending line of patients demand that beds be freed up for the next most critical case. It’s just part of what we’ve come to accept as a part the system, and this all too often pushes Rare Disease patients, with their invisible disease to the end of the critical healthcare line.
Tag after tag, denial after denial, all could be avoided by one compassionate moment offered by any Doctor who’s willing to consider they may not know everything. Although that thought might make a Doctor feel extremely humbled, it’s definitely the first step to helping Invisible Diseases, become Visible.
I’ve been down the long winding road of hurried, frustrated and arrogant Doctors, but I’ve also had the personal pleasure of witnessing just a few of the benefits that come from an open mind. I’ve also had the pleasure of discovering some of the gifts that Geneticists can offer patients with an Invisible Disease.
For me personally, that two-hour consult helped me feel the joy and relief that comes from the knowledge that my suffering was finally visible to someone! For the first time ever, someone saw my symptomatology as a whole, instead of a large collection of small, unexplainable parts.
My Geneticist helped me feel vindicated, but also shocked by making me reconsider everything I once thought of as “normal”. I’m not normal and I never will be. I don’t like it, but I’ll adjust.
Today I’m part of a Genetic Research study that “might” make me one of the thousands, that like Rei, is suffering from the effects of a Connective Tissue Disorder.
I might actually be more like Rei than I originally thought. I could be diagnosed with Ehler Danlos Syndrome (EDS), or it could also be Marfan’s, or Loeys-Dietz. As I write this the research team is looking for that genetic link, but whether they find it or not, I’ve come to accept that many symptoms in my life come from a disease that’s only now being considered, and not even close to being understood.
I believe it’s important to recognize all of the gaps that lay within our healthcare systems, gaps that leave patients and families to suffer from undiagnosed, misunderstood and Invisible Rare Diseases. I’m convinced that one of those gaps is the value added understanding provided by that unique specialty of Genetics.
If each patient could find that one compassionate Doctor who’s willing to take the time to consider the unknown, then we could be well on our way to discovering the answers that may not cure us, but have the power to lengthen our lives, and help us focus our energies.
Every patient I’ve ever met, who has been diagnosed with any form of Rare Disease quickly becomes his or her own Rare Disease Advocate.
No one can take on this fight the way a Rare Disease Patient can, but we need the help of those around us to help us achieve our goals. Our pain and suffering has the power to shut us down time and time again, but the voices of our supporters are one of the most valuable parts of the battle that will hopefully offer us solutions.
There are too many gaps in Canadian Healthcare, and for Rare disease Patients there’s even more than the norm.
There’s a lot that needs to be done to improve Rare Disease Patient Healthcare in Canada, but some major improvements could be achieved by increasing access to qualified Geneticists, that can be added to our Rare Disease healthcare team roster.
Please support our ongoing efforts by signing our petition. Please join us in requesting that the Canadian Federal Minister of Health approve the Orphan Drug Regulatory Framework.
What is this framework about?
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save, or significantly improve their lives. This has got to change!
The solution is for Canada to initiate an Orphan Drug Regulatory Framework. The United States and most countries in Europe have this life saving system in place, but Canada is lagging too far behind.
The Canadian framework will allow drug companies to apply to bring their treatments to Canada at the same time as the USA and Europe. It will create opportunities for Canadians to participate in clinical trials at the same time as other patients around the world.
Here's the good news!!
Canada’s Orphan Drug Regulatory Framework is already developed and ready to go!
The Orphan Disease Initiative was announced by the Federal Health Minister in October 2012, but the Orphan Drug Regulatory Framework has been repeatedly delayed. Canadians are forced to wait, while other patients with the same orphan disease in other Countries are not. As we wait for this Framework to come into action, patients are suffering, while others are losing their chance at living healthy, productive lives. Orphan disease patients cannot afford to wait any longer.
On Rare Disease Day, this February 28th, and as part of the Rare Disease Conference taking place in Ottawa on March 3rd, we have created a petition to ask the Canadian Health Minister to approve this framework. This approval can help the existing 3 million people, living with rare diseases in Canada, get access to the treatments and clinical trials that can make a difference in their lives today.
Will you sign our petition and add your name in support of the millions of Canadians with rare disorders?
We hope that you will be the starting point of a momentous wave of support across the country. Let's create a noise that Parliamentarians cannot ignore. Together we can make history! Let's try to get on the list of the top 50 Change.org petitions of all time! Canadians, and orphan disease patients deserve no less.
Please share this information and our petition with to your friends and family. Ask them to join in support of orphan disease patients across Canada.
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.
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!
