There are SO many of us who are seriously ill, but whose condition is considered “beyond the scope of care.” How is it that a condition that affects our nervous system and basic functions still does not have access to care in Canada? I live in BC (British Columbia) and have experienced the same obstacles as others in the various provinces.

Sydney, Tamara, Jess, A.L., Rachel, V.G., P.R., S.K., M.A…. and so many more.

With proper treatment, many of us could not only stop the progression of this condition – we could improve our health and regain a fuller life. But we urgently need help from our healthcare systems before it is too late.

Had I not found a way to travel abroad for specialized care in 2023, I would not be here today. In the last 2 years, my condition became so severe that I had difficulty with basic functions – speaking, motor skills, breathing, heart arrhythmias, temporary loss of vision – and periods when I became “locked up,” unable to move, speak or swallow.

By the time I had surgery, I had a posterior dislocation of my C1, with repeated compression on my brainstem, nerves, blood flow and disrupted cerebrospinal fluid circulation.

I am not alone. Others are still living with severe symptoms and need urgent help so they don’t die.

We also need more diagnostic knowledge and research – not just to intervene in crises, but to give people earlier perspectives for action. With the right strategy and care, some could live fuller lives and avoid long-term neurological damage.

Thank you to Ontario MPP Teresa Armstrong (NDP) who raised this condition in Parliament.

Thank you @tarmstrongndp for speaking on behalf of @sydneygesualdi and all of us dealing with this condition.