Prioritizing Pain: Advocating for Equitable Access to Care for EDS


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When 36-year-old Rosie started noticing changes to her body that didn’t feel right, she looked to the health care system for support.

Rashes were beginning to appear on her face, she was rapidly losing weight, and dental problems and deep joint pain began to plague her. Rosie was referred to a rheumatologist and received a diagnosis of fibromyalgia. Although Rosie’s experiences differed from her understanding of what fibromyalgia patients experienced, she wasn’t sure what else it could be.

Months later, Rosie met a woman with strikingly similar symptoms. This woman had been diagnosed with Ehlers-Danlos Syndromes (EDS), a rare genetic disorder affecting the connective tissues, which hold the body together. The more Rosie learned about EDS, the more she found that the condition was nearly a perfect match for what she’d
been experiencing.

What followed was a harrowing experience with health care providers, from general practitioners who refused to validate her symptoms, and concerns with a psychiatrist who accused her of faking her illness, all while Rosie’s health continued to spiral downward.

Years later, determined to be taken seriously, Rosie visited a leading doctor in the USA who has experience in treating EDS patients. This doctor validated her symptoms and confirmed the problems she was facing. Finally, after years of fighting, B.C.’s health care system accepted Rosie’s condition. However, after nearly a decade of neglect, the disease had already done much damage.

For years, the medical system rolled its eyes in mistrust and showed its misunderstanding of EDS, and it is patients like Rosie who suffer the consequences.

Chronic pain impacts millions of children and adults worldwide, impacting daily life, work activities, school, and mental health. And yet, chronic pain is often diagnosed as a disease in its own right, as opposed to having diagnostics done to rule out hereditary conditions, resulting in EDS being now considered as highly underdiagnosed.

Rosie is one of many patients who live with EDS, which affects one in 10,000 people, and of this population, as many as 100 will require neurosurgery. It affects the connective tissue, supporting skin, tendons, ligaments, blood vessels, internal organs, and bones. Individuals living with EDS and chronic pain are misdiagnosed or undiagnosed for years and pay out of pocket for private health care. Even with a referral from their family physician or specialist, patients face skepticism about their pain and are denied care.

TheILC Impact

Inspired by the heartbreaking journeys of young people diagnosed with EDS, The ILC Charitable Foundation (TheILC) has worked tirelessly to engage academia and the government on the critical need to address gaps in our healthcare system for EDS patients.

There are 13-subtypes of EDS, and symptoms can include hyper-extensibility of the skin, hypermobility of the joints, and tissue fragility. EDS can affect people of all ages in different ways. The condition is relatively mild for some, while symptoms can be disabling for others. Some of the rare, severe types can be life-threatening. Patients with EDS experience a lifetime of physical challenges—including chronic pain, fatigue, neurological deficits like bladder control, gastrointestinal issues, and other related issues—which impact their daily living and mental health.

Because of the immense challenges of this condition, advocating for hereditary EDS and other chronic pain diseases through public education campaigns and resources, wellness support, patient networks, government and stakeholder relations, and research to find cures is essential. EDS patients in every province across Canada are not looking for miracles—they’re trying to improve their quality of life. Their measure of treatment success is being able to perform daily tasks like writing and walking on their own, time spent with family, and not feeling anchored by the weight of their pain.

Over the last 12 years, TheILC has made incredible strides in increasing the recognition and awareness of EDS, leading to more people being correctly diagnosed and treated.

Helping connect families and individuals with a supportive community helps improve their quality of life with shared resources.

However, even with these wins, TheILC knows its mission is far from complete. The lack of access to specialized healthcare in neurosurgery leaves many patients suffering, with no place to turn. The list of neurosurgeons caring for EDS and Heritable Connective Tissue Disorders (HCTD) patients continues to grow globally, putting pressure on Canada.

It is critically important that government representatives know and understand the impact on patient lives due to healthcare inequities, especially in neurosurgery. Without this, even non-surgical therapies may help and lag in the understanding of techniques.

A critical decision is set regarding neurosurgery for EDS and HCTD patients in Ontario. After the loss of one of the only doctors offering this care in December 2016, patients were promised comparable quality care, which has never materialized.

As a charity and cause, TheILC has supported and advocated for access to care in ways that very few others have—the duct tape challenge is an example.

TheILC is determined to continue fighting hard to improve care, build upon what has been achieved, and give hope. With everything they do, they hope to inspire others, whether a parent, patient, healthcare professional, or donor, to join the cause, tell their stories, and bring this issue to their local MPPs and media.

Today, EDS patients continue to fight for the care they need. TheILC is committed to forging a future where Canadians living with EDS can access timely care and treatments they require from specialists, including neurosurgeons, without travelling out of the provinces they live in or country. All Canadians deserve an efficient diagnosis and pain management process and access to leading experts within their own country. With your support, these individuals can experience support, connection, and the care they need to thrive.

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To help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge-sharing resources, awareness, education, wellness support and research to find cures.


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