Manitoba Faces Critical Gaps in Access to Specialized EDS/HSD Care
A second-year social work student at the University of Manitoba is speaking out about what he describes as life-threatening delays in access to specialized medical care for Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) in Manitoba. Tomas Ponzilius has faced multiple denials from Manitoba Health for out-of-province treatment, and he is seeking support to advocate for a timely, appropriate solution that could benefit others living with these conditions as well.
What is at stake
– EDS/HSD are connective tissue disorders that affect collagen, which helps stabilize joints, ligaments, tendons, and other tissues. In severe cases, patients may experience joint dislocations, spinal instability, and complications that impact breathing, swallowing, and overall neurological function.
– Ponzilius reports recurrent dislocations of the shoulders, hips, and knees, with instability in the cervical and thoracic spine. He describes significant pain and disability that have impeded his education and daily life.
– He emphasizes the risk of progressive neurological damage if spinal cord compression is not promptly assessed and treated, including potential weakness, loss of function, and, in severe cases, paralysis.
Timeline and actions taken
– Manitoba Health has twice denied requests for out-of-province care that Ponzilius says are essential for his condition.
– He notes a lack of clear pathways for Manitobans with EDS/HSD to access appropriate specialized care within the province, despite inquiries to multiple stakeholders.
– Members of the Manitoba medical community, including his orthopedic spine and shoulder surgeons and his geneticist, have expressed concerns about the availability of qualified EDS/HSD care in Manitoba.
– The College of Physicians and Surgeons of Manitoba has indicated that there may be no surgeons in the province with the necessary education and experience to manage EDS/HSD at his level.
– The Manitoba Health Appeal Board decision related to a separate case is cited as context for the broader access challenges.
Public engagement and resources
– A CBC article and accompanying interview discuss the situation and broader concerns about access to appropriate care for EDS/HSD in Manitoba.
– Ponzilius has provided a summary of steps he has attempted, including outreach to Ontario’s HOPE Clinic (which requires residency there) and attempts to obtain guidance from provincial and national organizations, with limited or no response.
– He has contacted multiple Manitoba MLAs, but reports no replies, and he has sought input from local and international specialists.
What he is asking for
– An urgent meeting with senior Manitoba government representatives to discuss access to medically necessary care, including potential surgery and postoperative rehabilitation.
– A collaborative approach to develop pathways that enable Manitobans with EDS/HSD to receive appropriate care without undue delays or out-of-province barriers when necessary.
– A broader commitment to ensuring that healthcare systems recognize and address the specialized needs of patients with EDS/HSD, so that no one is left without viable treatment options due to cost or logistical hurdles.
How you can help
– If you support efforts to improve access to medically necessary care for EDS/HSD, you can reach out to Manitoba government offices to advocate for a timely, collaborative response.
– Premier Wab Kinew’s constituency office: 204-615-1922
– Minister of Health: 204-945-3731
– Consider requesting an urgent meeting to discuss the patient’s case and potential system-level solutions.
– Allies who do not have EDS/HSD are welcome to participate in advocacy to raise awareness and push for policy improvements.
– Sharing information, amplifying patient experiences, and encouraging constructive dialogue among healthcare providers, researchers, and policymakers can contribute to lasting change.
A call for dignity and access
This is a plea not for special treatment, but for access to medically necessary care that can stabilize a deteriorating condition and enable individuals with EDS/HSD to pursue education, work, and daily life with greater safety and dignity. The goal is to ensure that all Manitobans have a clear, timely path to appropriate treatment, regardless of the cost or complexity of providing that care.
If you’d like more details or to discuss constructive ways to support improved access to care for EDS/HSD, please feel free to reach out.