r/Winnipeg • u/ForeverCuriousEagle • 1h ago
News Please help me get an urgent meeting with Premier Wab Kinew about denied EDS care
Hi everyone,
My name is Tomas Ponzilius, and I am a second-year social work student. I am posting again about my ongoing struggle to access specialized medical care for Ehlers-Danlos syndrome (EDS)/HSD. Manitoba Health has denied my requests for out-of-province care twice, and I am increasingly worried about my future.
CBC recently published an article about my situation for those interested:
https://www.cbc.ca/news/canada/manitoba/ehlers-danlos-syndrome-out-of-province-9.7393474
EDS affects collagen, which provides structural support to joints, ligaments, and tendons. In my case, this results in widespread joint instability and recurrent dislocations. An analogy would be that my collagen is made of clay, while yours is made of wood. My connective tissue is more vulnerable to injury, physical and biomechanical differenes, which is why I need specialized medical care.
I regularly experience dislocations of my shoulders, hips, and knees, and my hands are also unstable. Most concerningly, my cervical and thoracic spines are unstable, and breathing and swallowing have become extremely painful. This is made worse by my instable ribs which are also affecting my breathing too. I have, due to the cervical instability, spinal cord compression, and I am frightened that without appropriate treatment, my condition could become life-threatening.
My health has also made education incredibly difficult. Most days, I am bedbound because of severe pain and instability. Even completing two university classes has become a struggle.
I have been trying to find appropriate care for a long time. Despite repeated requests, I have not been directed to a provider in Manitoba who can meet my specialized medical needs. Three MLAs have contacted Manitoba Health on my behalf without receiving a response, and I have sent approximately a dozen emails myself without receiving a response. I have also sought input from local and international doctors and surgeons regarding the availability of appropriate care. The College of Physicians and Surgeons of Manitoba has also indicated that it does not believe there are surgeons in Manitoba with the necessary EDS/HSD education and experience.
I am now appealing the most recent denial, but the process takes time, and I am frightened that my health could deteriorate before I obtain the treatment I need.
I believe there is hope if I can access the appropriate surgeries and specialized postoperative rehabilitation. I want the opportunity to stabilize my condition, improve my functioning, and continue my education.
I am asking for your help.
Please call the constituency office of Premier Wab Kinew at (204) 615-1922 and the Minister of Health's office at 204-945-3731. Please ask them to arrange an urgent meeting with me, Tomas Ponzilius, to discuss access to the specialized care I need.
I want to work collaboratively with the Manitoba Government to find a solution. I am not asking for special treatment. I am asking for access to medically necessary care that can address my condition.
If you would like to join me in advocating for access to this care, I would welcome your support. You do not need to have EDS/HSD to help. All allies are welcome.
I believe all Manitobans, regardless of their health needs, deserve the opportunity to live and receive necessary medical care. No one should be left without a path to appropriate treatment because of the cost of providing it.
Thank you for reading and for any support you can offer.
Tomas Ponzilius