Prioritizing Pain: Fighting for Access to Care


Photo © Courtesy of The ILC Foundation

Patients afflicted with Ehlers-Danlos Syndromes (EDS) who do not have access to neurosurgical healthcare heard Dr. Peng say  “I’m going to talk to you about two perspectives. One, from the clinician for how we face the difficulty in diagnosing and managing patients; and two, from the patient on the access of care in relation to the equities of health, which is the theme of this meeting. When I read the story about TheILC Ambassador it broke my heart. What she,and others were facing as a person with EDS 10-years ago, is what we are still facing today now.”
Chronic pain impacts millions of children and adults worldwide, impacting daily life, work activities, and mental health. And yet, chronic pain is often misdiagnosed or undiagnosed, leaving patients lost and without treatment options.

One such condition is Ehlers-Danlos Syndromes (EDS), a group of rare and inherited conditions that affect connective tissue, which supports skin, tendons, ligaments, blood vessels, internal organs, and bones.

All too often, individuals living with EDS and chronic pain are misdiagnosed or undiagnosed for years and are forced to pay out of pocket for private health care. Even with a referral from their family physician or specialist, patients face skepticism of their pain and are rejected.

Inspired by the heartbreaking journeys of young people who were 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.

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

“EDS affects someone that I care about very much. What I like most about these conferences is that for many years doctors didn’t know what she had, didn’t know how to help her even if they did know what she had and with these conferences, she can get together with people that go through the same thing as her, and it’s a very helpful experience for everybody.”—Tom, TheILC supporter

There are many types 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. For some, the condition is relatively mild, while for others, their symptoms can be disabling. 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, and other related issues—which impact their mental health.

Because of the immense challenges that come with 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 Ontario and Canada are not looking for miracles—they’re trying to improve their quality of life. Their measure of success in treatment 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.

“I’d like to express to the patient population that no matter how hard the battle gets, no matter how often your pain is dismissed, please never give up.”—Denise, patient

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 having to travel out of the province or country.

All Canadians deserve an efficient diagnosis and pain management process and access to leading experts here at home. With your support, these individuals can experience support, connection, and the care they need to thrive.

Ehlers-Danlos Syndromes Campaign for Specialized Healthcare

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