Thread by @chydorina

A major part of the stories of #iamthefaceofMAID is that some health conditions are NOT recognized and/or treated in Canada (like MCS and hEDS). BUT!!! They are recognized by #MAID. This is THE disconnect Canada! This is why we need to talk about #IamthefaceofMAID 1/n

If #MAID will recognize conditions, like #MCS and #hEDS, and there are not even specialists in Canada that treat those conditions. Well, we have a problem.
2/n

The #hEDS community struggles every day, thousands of us, for treatment that we know is available but it is not offered in Canada. Often we travel to the US for diagnosis because there are so few specialists in Canada. The surgeries needed are not offered in Canada. 3/n

As a #hEDS patient with CCI and cervical stability issues I cannot even get the right type of MRI in Canada through medical services (a flexion-extension MRI) to be diagnosed properly. The only one in BC is in Kamloops and is not covered by BC medical. 4/n

Let me repeat. I cannot even get a proper diagnosis in Canada for my condition because we dont have the right MRI machines. No Canadian Neurosurgeons will even see #hEDS patients or look at their scans (we have all tried). 5/n

Our only option is 100K cervical surgery offered by two specialists in the US. The full expense of this would be born by the patient. Unfortunately many of us are simply too sick to travel for diagnosis and treatment and based on the cost it is out of reach for most families. 6/n

When I realized the women in the Simon's commercial was 36 and had already been euthanized and that we shared a diagnosis - its hard to describe how I felt - I was torn apart. I know each step she followed to get where she went and each thing that happened to me 7/n

to ensure that my path went in a different direction. I was her, I could be her. I could still be her. That things wont suddenly go downhill for me again is not a given. My health is very poor but somewhat controlled. Tomorrow, who knows. 8/n

#hEDS is a condition that most dont find about until their 30s or 40s after 20+ specialists and doctors. There is no reason for this. Its not a hard condition to diagnose. It should have been done when I was a child - when lifestyle changes could have made a difference. 9/n

My own diagnosis was by chance. A visiting specialist in #EDS from England was doing a sabbatical at the Genetics Center in Halifax when I had my appointment - they did a Beighton test right at the end of my appointment when they saw how much compression gear I wore. 10/n

This was in 2017. I was 43 when I was diagnosed after years of dragging myself from specialist to specialist all the while getting sicker and being told time and time again it was all in my head (and I was a tenured Biology professor at a major research university!). 11/n

alexschadenberg.blogspot.com/2023/02/iamthe…