Ten-Years.  So many words. Still left out!

Glimmers of Hope and the Code of Silence!

Health Canada has released the final report from the Canadian Pain Task Force (CPTF), An Action Plan for Pain in Canada. The plan lays out recommendations for targeted actions necessary to improve outcomes for the nearly eight million Canadians living with chronic pain, which includes The ILC cause for the 1 in 1000 Canadians with Ehlers Danlos Syndromes and other forms of Heritable Connective Tissue Disorders, where action needs to be taken to reduce pain’s impact on families, communities, and society.

The ILC Charitable Foundation (“The ILC”) is a national partner organization and supports the recommendations in An Action Plan for Pain in Canada.

Over the years, provincial governments have from time to time invested in programs to address the inequities of healthcare in this population giving – Glimmers of Hope!

Caring medical providers, patients and parents hear and see some of the most tragic and psychologically scarring situations in health care (e.g. abuse, work-place bullying, neglect, violence, and death) on a regular basis, and they rarely, if ever, talk about them. While official policies (in-hospital and out) are to guide these healthcare providers and to support parents and individuals to express themselves in healthy ways in utilizing mental-health resources, there is an unspoken code that pushes back strongly against utilizing such resources: the “Code of Silence.” 

This attitude, and our inability to address it, is literally killing people. Anxiety, PTSD, cancer, opioid addiction, and suicide rates soar. We are failing these men, women and children who rely on our systems to address the complex care needs and we are failing our most vulnerable. This is Canada's dirty little secret in healthcare.

Offering them traditional counselling and therapy isn’t working. It is time to find a new approach. Let's make sure the cries of pain do not fall on deaf ears ever again.

Sandy Smeenk is organizing this awareness campaign and fundraiser to benefit individuals suffering with Ehlers Danlos Syndromes (EDS/HSD) with its related conditions and Chronic Pain. With a need that is so great, we need your help to raise $3M!

As the co-Founder of The ILC, in the last 10+-years, I have volunteered my time with colleagues to develop programs, where none existed, to support the over 700,000 individuals with Ehlers Danlos Syndrome (EDS) and Chronic Pain Diseases. And, together, we have met a countless number of people whose lives have been devastated from the impacts of these highly misunderstood and overlooked conditions.

EDS/HSD is actually a cluster of a number of conditions and affects more closely 1 in 1000 Canadians. Chronic Pain spares no one – it strikes 1 in 5 and children and youth are not spared. With EDS, individuals can also suffer with neurological deficits on top of the pain they experience that rob them of being able to enjoy family, friends, school, work and a social life. Dr. Furlan's video below does an excellent job of explaining EDS.

At its worst, there are over 3,700 people in Canada with EDS that require life-saving, quality of life-giving surgeries. Every hospital is struggling right now due to COVID. With 16-month-long wait lists for surgeries, there are risks of irreversible nerve and tissue damage. Giving people their lives back by providing access to these specialized surgeries is critical.

The other day, the last straw was pulled and sustainable funding is no longer there, for very important clinics to meet the need and treat this patient population. There are so many people who have nowhere to turn. Their lives went from ordinary to, one day, not being able to stand or walk. There is simply no access to care. Many have lost hope. At worse, some are offered Medical Assistance in Dying (MAiD), as primary care doctors run out of options.

Living with a rare disease and having passion to this cause, my life experience contrasts a view of the healthcare system where disability, whether physical or invisible are not well-understood or considered because of being just that, rare. I have felt the frustration of the lack of access to care. At times, I feel like a warrior, battling against tremendous odds for a difficult cause.

Now, with the impacts of COVID, with even less support, I know that we have to do everything we can to bridge the gap between patients, the hospital and government funding. We all need to help right now. Leaving our most vulnerable without care is something we must not stand for.

Here’s just a glimpse of what we go through on a day-to-day basis at The ILC. Imagine you, yourself, or your son or daughter going from being successful in your work, or school life, and/or enjoy participating in athletics and physical activities, to not being able to get out of bed, losing weight and riddled with body-wide pain every day. You see every doctor and specialist but you’re told they can't find anything wrong. Then, finally, a dermatologist or cardiologist diagnoses EDS; or if you are an individual born with Spina Bifida, the shunt that the paediatric neurosurgeon placed fails and you learn that you have developed a Chiari Malformation. 

This could be the answer! You’re put on a waiting lists to see multiple specialists, and you stay on the lists for over a year. In the meantime, you learn that Chiari Malformation is the cause of the severe pain, brain fog, unrelenting headaches, difficulty swallowing and the short-term memory issues that you experience on a daily basis.

Then you learn that while Canadian neurosurgeons and specialists are working to better understand EDS and the specialized needs in patients with less common conditions such as Chiari, Tethered Cord Syndrome, Cervical-Cranial Instability (CCI) and spontaneous cerebral spinal fluid leaks, and adult care in Spina Bifida, there are no neurosurgeons being hired to specialize in the types of surgeries these patients require. Complete and utter devastation!

Please help The ILC to help individuals suffering with these chronic pain diseases have access to care and support services to help them cope while provincial ministries of health senior policy writers, doctors and researchers work to bridge these gaps. The ILC wellness support service programs and specialized clinics are imperative in a system that already fails EDS, rare disease and chronic pain patients.

Help us reach 120,000 people who each donate $25 dollars, together we can bridge the gap while The ILC continues to expand its programs and advocate for sustainable resources to address the inequities in our healthcare system.

For The ILC, the lines get blurred between the volunteer work we do and the friendships that are formed with the individuals, children and families we serve. So, from our heart to yours, please help give HOPE − Donate and SHARE this critical campaign!

As this awareness and fundraising campaign goes on, we will be adding patient stories, pictures to help us reach our goal with messages that express the degree of need. Please help so that the children that fear they will lose their Mom, or the teenager who is left to suffer in silence, can have hope again.

We are the voice for this forgotten and under-served population in Canada. To do this effectively, The ILC manages funds in the best way possible as we operate with minimal overhead.

Financial resources raised from this campaign will go to The ILC Foundation Research Program through Hospital Research funds and to expand charitable programs:

1. The ILC Sustainable Program Growth - $1M

a) Wellness Support & Resources - Advanced software technologies

b) Youth Program three-day Retreat; Adult Member three-day retreat (Accommodation, meals, instructors, welcome and program package)

c) Accredited healthcare education and patient learning conferences

d) Support, Advocacy & Education Program Resources

e) Program outreach, communications & stakeholder relations

f) Insurance, bookkeeping and professional memberships and fees

2. The ILC Research for Cures through hospital research funds - $1M

a) Research studies to improve understanding of diagnostics and treatments

b) Research studies to expand upon the Pentad of Autoimmune Disease, Dysautonomia Hypermobile EDS, Gastrointestinal Dysmotility, Mast Cell Activation Syndrome; and Chronic Pain.

3. The ILC Trust Fund for an Inter-Disciplinary/Multi-Disciplinary Neurosurgical Research Chair - $1M