“I no longer want to have my voice fall on deaf ears. I want to be heard. I want change. I want to take my power back. I am a survivor despite the lack of proper medical care with a systematic lack of knowledge and compassion.”

“I am a 60-year-old mother with Classical EDS and mild Osteogenesis Imperfecta. As a child, I suffered from pain and dislocations. Doctors told me that I was double-jointed and that I would grow out of it. When I was 13, I began down a road of complex (and failed) orthopedic surgeries to try and stop the pain, dislocations, and inability to participate in life. My late 20’s were especially difficult leading to my development of medical PTSD.

I even experienced sepsis and a subclavian blood clot requiring two surgeries and the requirement of blood thinners for life. After surgery to fuse my shoulder, the surgeon ignored my painful, swollen, and blue arm for over a year. The surgeon dismissed this as chronic pain, and I had to report him to the College of Physicians where the committee determined he acted within Medical Practice Standards. The College silences patient voices and protects doctors – making it difficult to sue doctors for malpractice.

I finally was referred to a Pain Clinic in Toronto which required a 2-week assessment to determine whether the pain was real or in your head. The doctor and staff were abrupt, rude, and terrifying. I was injected with Sodium Pentothal (truth serum) to see if I was faking my pain. They violated my rights and were abusive, but they diagnosed me with Thoracic Outlet Syndrome and Subclavian Blood Clot. I next had to undergo invasive surgery to remove my first rib. Within months, the symptoms returned, and doctors again told me it was impossible, in my head, and suggested I needed psychiatric care.

I sought out help wherever I could – subjecting myself to dangerous interventions. Through all of this, I graduated from university, got married, finished my dietetic internship, and worked. I read journals about surgery for Thoracic Outlet Surgery and found the inventor in Denver. I traveled there and got the surgery that saved my life – he found another blood clot, cartilage-like tissue growing where my rib was removed, and scar tissue wrapped around my lung and cervical nerves. In Canada, there is no EDS knowledgeable doctor that is capable of diagnosing these conditions or correcting them.”