Canada’s Homelessness Is Not An Addiction Problem

When we think of homelessness, a harmful and misleading stereotype often comes to mind: that most people living on the streets or in encampments are addicted to drugs or alcohol. While addiction is undoubtedly a serious issue among some people experiencing homelessness, it’s crucial to recognize that not all homeless individuals are addicts. In fact, many are seniors, people with disabilities, or working-class Canadians priced out of affordable housing. Let’s explore the real face of homelessness in Canada, using data to challenge misconceptions and show the complexity of this growing crisis.

Only a Fraction of the Homeless Population Struggles with Addiction

A common misconception is that the majority of homeless people are addicts, but research suggests otherwise. Studies show that between 30-50% of homeless individuals are battling substance use issues. While this is a significant portion, it also means that at least half of the homeless population is not addicted to drugs or alcohol.

This is an important distinction because it shows that homelessness is not just about addiction—it's about poverty, systemic barriers, unaffordable housing, and more. By focusing solely on addiction, we overlook the broader economic and social factors that push people into homelessness, such as rising housing costs, inadequate disability support, and the lack of affordable rental options.

Seniors: A Growing Demographic in Homelessness

Another rapidly growing group among the homeless in Canada is seniors. Due to skyrocketing rental costs and fixed incomes that haven’t kept pace with inflation, more and more elderly Canadians are unable to find affordable housing. In fact, seniors now make up around 14% of the homeless population. For many seniors, homelessness isn’t the result of addiction but rather a lack of affordable housing and insufficient financial support.

Think about that for a moment: people who have worked their entire lives and contributed to society are now finding themselves living on the streets or in shelters because they can’t afford to live on their modest pensions. These individuals are facing homelessness due to **systemic failures**, not personal choices.

People with Disabilities: Another Overlooked Group

People with disabilities are also overrepresented among Canada’s homeless population. Between 45-60% of people experiencing homelessness report having some form of disability, whether physical, mental, or developmental. Many of these individuals rely on government assistance, such as disability benefits, which often fall far short of covering the basic cost of living, let alone housing.

For people with disabilities, affordable and accessible housing is especially hard to come by. They may require accommodations like wheelchair access or proximity to healthcare services, making their housing search even more challenging. These are not people addicted to drugs—they are Canadians who need better support systems to ensure they have a safe, stable place to live.

The Real Causes of Homelessness

It’s important to acknowledge that addiction does play a role in homelessness for some individuals. But the overarching issue is Canada’s housing crisis. Housing costs have surged, particularly in urban areas like Toronto and Vancouver, where many Canadians—working full-time jobs—still can’t afford rent. Seniors, people with disabilities, and low-income families are especially vulnerable. 

Homelessness is a complex issue with multiple causes. For some, it’s addiction, but for many others, it’s the combination of rising living costs, inadequate social support, and a lack of affordable housing that has forced them onto the streets.

Shifting the Narrative: Homelessness is Everyone’s Problem

We need to shift the way we think about homelessness. Rather than labeling homeless people as addicts, we must recognize the diverse realities they face. Many are individuals who simply can’t afford the rising cost of rent, others are seniors living on fixed incomes, and some are people with disabilities who don’t receive the support they need.

This is not just a problem for those experiencing homelessness; it’s a problem for all Canadians. As long as we continue to perpetuate the stereotype that homelessness equals addiction, we overlook the real structural issues that are pushing people into poverty.

The conversation about homelessness needs to focus on solutions—affordable housing, better support for seniors and people with disabilities, and social safety nets that ensure all Canadians can live with dignity. It's time to stop blaming individuals for their circumstances and start working on the systemic changes that can help end homelessness for good.

Canada’s Homelessness Crisis Is Not Just An Issue Of Addiction, And The Numbers Back That Up

The rise in homelessness is being fueled by the lack of affordable housing, economic inequalities, and inadequate social support for seniors and people with disabilities. Let’s break the stigma and push for real, long-term solutions that address the root causes of homelessness, rather than falling back on outdated stereotypes. 

By understanding the complex realities of homelessness, we can start to advocate for the right policies—ones that will make housing accessible to all Canadians, regardless of their circumstances.

Medical Assistance in Dying (MAiD): A Last Resort for Rare Disease Patients Facing Unbearable Suffering

 Living with a rare disease often means facing daily battles that many can’t imagine. While advances in medical technology and healthcare offer hope to some, for many rare disease patients, the Canadian healthcare system fails to provide the care, support, and treatments they desperately need. Increasingly, Medical Assistance in Dying (MAiD) is becoming a tragic solution for those whose suffering is too much to bear.

Rare Diseases: A Life of Pain and Uncertainty

Rare diseases are often misunderstood, misdiagnosed, or completely ignored by healthcare professionals. Patients face significant barriers to accessing proper treatment, timely diagnosis, and informed care. In Canada, where access to rare disease clinics and specialists is scarce, many patients spend years — or even decades — waiting for answers. The isolation, constant pain, and worsening symptoms lead to a diminished quality of life, and in many cases, despair.

Compounding these issues is the "financial burden" that accompanies rare disease care. Many patients are unable to work due to their debilitating conditions, and disability benefits are often insufficient to cover their basic living costs, let alone the specialized treatments they require. With inadequate support from provincial healthcare systems and long wait times for care, many rare disease patients are left feeling hopeless, facing a future where their health continues to decline with no relief in sight.

The Expansion of MAiD and Its Role in the Rare Disease Community

Originally introduced as a compassionate option for terminally ill patients experiencing unbearable suffering, **MAiD** has been expanded in Canada to include individuals with **grievous and irremediable medical conditions**, even if they are not terminal. This expansion has had a profound impact on the rare disease community, where many patients are grappling with chronic and painful conditions for which there are few — if any — treatment options.

For some rare disease patients, MAiD has become the only escape from a life of unrelenting pain and suffering. Faced with a healthcare system that can’t or won’t provide the care they need, and unable to afford treatments or find relief through other means, patients are turning to MAiD as a way out. 

When Quality of Life Becomes Unbearable

One of the most disturbing aspects of MAiD’s role in the rare disease community is that many patients opting for assisted death might have chosen to live had they been given proper care and support. However, without access to rare disease specialists, effective treatments, or even basic healthcare services, these individuals feel abandoned by the system. The emotional and physical toll of living with a rare disease, compounded by a lack of resources, has left many patients feeling that death is the only option to end their suffering.

MAiD, in this context, is not simply a compassionate choice for those facing the end of life due to terminal illness. Instead, it has become a last resort for patients who have been let down by a broken healthcare system. Rather than addressing the root causes of their suffering — lack of access to care, inadequate support, and financial hardship — patients are being given the option to die rather than to live with dignity.

The Need for Advocacy and Change

It is essential that we, as a society, recognize the dire situation facing rare disease patients in Canada. The expansion of MAiD as an option for those with chronic conditions reflects a failure to provide the necessary care and support that could improve the lives of these individuals. Instead of offering MAiD as the only solution, we must push for:

• Increased funding for rare disease research: More investment is needed to understand these conditions and develop effective treatments.
• Improved access to specialists and care centers: Patients need to be able to access rare disease clinics and informed healthcare providers who understand their conditions.
• Better financial support for disability and healthcare needs: No one should be forced into MAiD due to poverty or the inability to afford life-saving treatments.
• A stronger support network for patients and caregivers: Mental health and social support services must be expanded to help those struggling with the emotional toll of living with a rare disease.

Compassion Requires Action

MAiD should never be the default option for patients who could live fulfilling lives if only they had access to proper care and treatment. The Canadian healthcare system needs to address the gaps that leave rare disease patients suffering and consider the broader implications of offering MAiD to those whose lives could be improved with the right interventions.

As a society, we must demand more from our healthcare system, our government, and our support structures. Rare disease patients deserve to live with dignity, and it is time we focus on providing them with the care they need — not just offering them a way out.

Canada's Disability Inclusion Action Plan - and its promised effect on the lives of Canadians with Disabilities.

"In the fall of 2020, the Government of Canada announced it would create a Disability Inclusion Action Plan. In Budget 2021, the Government committed $11.9 million over 3 years to undertake consultations to reform eligibility processes for disability programs and services."

We're nearing the end of 2023, and we're still waiting for this outcome to be realized.

In July 2023, Federal MP Carla Dawn Qualtrough was appointed Minister of Disability Inclusion, and as a person born with disabilities, one would assume she'd have a good understanding of the challenges we face, but as a successful lawyer and passionate advocate of sport, does she really understand the challenges faced by persons with disabilities who live in poverty. If she had, many think she would have pushed harder for the Canada Disability Benefit (CDB), which is supposed to be part of the Disability Inclusion Action Plan. However, at this point, we still don't even know if this income, once approved, would be clawed back by the Provinces as income for those who receive disability income support from their Provincial Disability Income Programs. 

As Canada faces a growing housing crisis with no solid solutions, those with disabilities are often first in line to be left homeless. 

In Ontario, where 38% of its population is homeless, a high majority of those counted are people who live and rely on Provincial disability support income. If these funds are clawed back, this will leave many without enough money to afford both a home and food at the same time, let alone the other services and supports they require to live a life as productive or involved members of society.

With the average one bedroom, Ontario apartment rental going for approx. $2200 per month this leaves Ontario Disability Income Support (ODSP) recipients with few housing options because their average monthly income is only $1300. 

In addition to basic living costs, many of the programs and services we rely on, such as the Assistive Devices Program (ADP), offer mobility devices that come with either an extra cost or fewer of the specific needs we require in our mobility and daily living aids. Many of the products we need need to be covered, aren't covered, leaving us to carry these costs as well. 

Other programs and healthcare services, such as physiotherapy, dental care, vision care, and even prescription drugs, also come with additional costs. Since most Provincial programs only cover a small percentage of these products and services, while many of the most proven and successful health recovery modalities and even medications aren't covered at all, leaving most people with disabilities without the devices, treatments, care and support that would make it possible for them to live healthy, stable, and productive lives. 

Stress and worry are a normal part of living for everyone today, but for people with disabilities in Canada, what we carry significantly impacts our quality of life and our longevity. 

The Federal Medically Assistance in Dying (MAiD) program was built to provide Dying with Dignity for those with terminal illnesses, it's been expanded to cover "grievous and irremediable medical conditions" giving people with disabilities the option to use this program if their quality of life becomes less than they can handle. This means that people with disabilities across Canada who've been forced onto the streets because of the homelessness issue are making use of this program in increasing numbers, while some are using this program to prevent suffering that could have been prevented if the CDB, were initiated now, instead of later.

Most of society is not aware of the service gaps and lack of support offered to persons with disabilities across this Country, and even more are unaware that many within the disability community would love nothing more than to return to work or school if only they had access to housing stability, the food, the services, the products and the healthcare they required to function on a stable, and reliable basis.

In addition to long-term and permanently disabled Canadians who suffer, we must consider those injured at work or through other trauma such as car accidents, slips and falls, and other life-altering events. 

These persons, who now become part of the more comprehensive, ability-challenged group of Canadians, also face a long and arduous battle to access the support they need to recover or adjust to their new realities. This leaves many permanently disabled when access to proper care or devices would have allowed them to heal and return to work. Many within this group include highly educated individuals, including those we rely on the most, such as nurses and other frontline medical staff. This group of Canadians, include all professions, which adds to our staffing shortages across the Country.

The issues persons with disabilities face across Canada are doing nothing but adding to the problems all Canadians face on a daily basis. 

Perhaps, instead of blaming the disabled for their burden on society, it's time to learn more about our realities, hoping that we can all come together and urge our government to change how this group of Canadians is treated.

As society looks for someone to blame for their struggles, it's time to place our energies where they belong, and have always belonged, and that's with the government of Canada and each Province who have legislated this nightmare into existence.

IN CANADA, our right to die has become easier to access than our right to live with dignity.

CANADIANS WITH DISABILITIES NEED YOUR HELP!

PLEASE SHARE, READ, AND TAKE ACTION!

The link attached below will bring you to one of the best examples I've seen that discusses what's happening in Canada today, as our right to die becomes easier to access than our right to live with dignity.

Canada used to be known as a Country with compassion, but today, we're gaining a reputation as the nation that leaves behind its most vulnerable.

According to No Options, No Choice, 

"Many Canadians living on the margins of society do not have access to the services they need, like palliative care, mental health services, and support for people with disabilities. Their needs can be as basic as lack of housing, food, companionship and financial support. Without access to quality care and resources that would meet their basic needs, their options become limited, and without options, there are no choices."

Without the basics of life, how can anyone move forward from living with the basics of life to flourishing? 

They often can't. 

When you're already living with the excessive challenges that come with disabilities, everything else becomes an even greater challenge to overcome. For some, these challenges are easier to manage, while for others, depending on the disability, they become insurmountable, and this is when programs like MAiD become weapons instead of solutions to a problem.

"At the same time, access to MAiD has been expanded in Canada since its introduction in 2016. In March 2021, the federal government passed revised legislation that changed the eligibility criteria and procedural safeguards for MAiD. The new law grants Canadians with chronic illness or disability who are not terminally ill, the right to seek MAiD.

When they are at their most vulnerable, people may choose MAiD if they don't have suitable options.

We have a social responsibility to help people live their lives on their own terms. When Canadians are at their most vulnerable, they should be provided with meaningful options to live before they are provided with options to die."

What can you do to help?

"Everyone has a role to play. Provincial governments need to enhance their current financial and program commitments to ensure all Canadians can live with dignity. We can all reach out to people we know in our area to provide a helping hand. Churches, NGOs and community groups can equip and coordinate these efforts. We need to restore our Canadian reputation for compassion."

‍

To learn more, please visit:

https://www.nooptionsnochoice.com/...

We do all have a role to play in helping to resolve this deadly Canadian-made and growing problem. I hope you'll join us in the efforts made by a growing number of Canadians who believe that persons who live with disabilities deserve more than what they're living with in Canada today.  

My Story Began With Tarlov Cyst Disease - What is Tarlov Cyst Disease?

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, 

• Cerebral Spinal Fluid (CSF) Leaks 
• Adhesive Arachnoiditis (AA)
• Irritable bladder syndrome
• Irritable bowel syndrome
• Endometriosis
• Myofascial pain syndrome (MPS)
• Chronic Regional Pain Syndrome (CRPS)
• Fibromyalgia
• Secondary depression
• Pudendal Neuralgia
• Enthesopathies (e.g. plantar fasciitis)
• Esophageal dysmotility
• Osteoarthritis
• Insulin resistance
• Metabolic syndrome
• Sciatica
• 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.

YOU DON'T LOOK SICK! ENVISIONING THE INVISIBLE RARE DISEASE

by Sherri Jones  -

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 Sign The Petition! Support the Canadian Orphan Drug Regulatory Framework!

Please Support Canadians in their need for an 

Orphan Drug Regulatory Framework!

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.

Please remember. Your support today could mean the difference between life and death to someone you love; now or in the future.

Petition -MOH - Approve The Orphan Drug Regulatory Framework!

Together we can make a difference. 

Thank you in advance for your time.

Sincerely,
Sherri L. Jones, 

The Tarlov Cyst Society of Canada

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!