The ILC Charitable Foundation (The ILC) organizes and funds programs to support its strategy to raise awareness about Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders and comorbid conditions (EDS/HSD+), which affects one in 300 Canadians and one in five people living with chronic pain, and children are not spared.
The ILC believes that engaging Canadians and their families living with EDS and chronic pain in research and translating these results will lead to the development of care pathways that are currently lacking. We see lasting partnerships between our organization and researchers with evidence to improve access to healthcare as critical.
The ILC model of community-based care fosters knowledge transfer between peers. “Clinicians-to-clinicians and patient-to-patient is a significant step forward, as it addresses peer support in a manner likely to generate better patient outcomes while reducing healthcare costs,” said Dr. Anna Banerji, MD, Pediatrician and Recipient of the Order of Ontario.
The ILC organizes and funds the Canadian Ehlers-Danlos Syndromes CME accredited annual conference where multidisciplinary specialists present on their respective areas of expertise and include interactive patient engagement sessions. Noteworthy statements: “Following The ILC first scientific meeting in 2013, we revisited patient files and confirmed diagnosis of EDS in 40 additional patients, proving a 200% increase in this patient population. Today, we are diagnosing approximately five patients a week with EDS.” Wasser Pain Clinic; and, “Your outstanding effort will lead to a change in culture from the individual to the multidisciplinary medical approach as well as it will impact patients and families. Well done!” Dr. Juan Guzman, Internal Medicine, Cardiology, McMaster Health Sciences.
- For the EDS/HSD+ patient who lives with intermittent chronic acute pain and does not respond to prescribed medications that would provide pain management including in procedures e.g.: stitches, dental procedures, setting dislocated joints, what diagnostic test can be done to ensure they have the necessary protein and/or enzyme to metabolize medications?
- In patients with classical Ehlers-Danlos Syndrome (EDS) or other forms of Heritable Connective Tissue Disorders predisposing them to corneal rupture, what investigations can be undertaken to enhance our comprehension of the organization of collagen fibrils responsible for corneal, lens, and vitreous transparency and refraction, and the specific collagens within the sclera contributing to ocular structural integrity?
- For expectant mothers with EDS/HSD+ whose babies are born with osteogenesis imperfecta, and who experience easy bruising, what research can be done to mitigate risk of doctors alleging child abuse with babies taken into child protective services and parents being charged with child abuse?
- What specific gut microbiome studies can be conducted to elucidate the underlying factors contributing to gastrointestinal disorders and how do those factors impact mast cell activation disorders?
- How can research break down barriers to care in the jeopardy for the EDS/HSD+ population in Canada’s health system: The patient the healthcare providers shun. There has been no other disease in the history of modern medicine that has been neglected as much as EDS (Rodney Grahame, 2014, as cited in Lazarus, 2022). Full report available upon request.
The ILC Charitable Foundation is a Member of Research Canada: An Alliance for Health Discovery and a Sponsor of the Virtual Parliamentary Health Research Caucus Event, Shaping the Future of Health Care with New Technologies, Devices and eHealth Innovations.
