To everyone in Manitoba living with Ehlers-Danlos Syndrome (EDS) or HSD:
I need you to join me.
EDS/HSD affects connective tissue, which is what helps hold our joints, muscles, ligaments, blood vessels and other tissues together. For some of us, it can cause severe instability, chronic pain, repeated dislocations, problems with breathing and swallowing, blood flow issues and other serious complications.
For me, it has affected almost every part of my life.
I have severe instability throughout my body, including cervical instability in my neck. I have struggled with breathing and swallowing, severe pain, repeated joint problems and problems that may involve blood flow. Yesterday, I passed out.
I have spent years trying to get appropriate medical care. I have been forced to look outside Manitoba for specialized care because I have not been able to access the expertise I need here.
And I know the answer cannot simply be “send everyone out of province.”
We need to build this expertise in Manitoba.
Long term, we need a dedicated EDS/HSD clinic with a specialized multidisciplinary team. We need geneticists, physicians, physiotherapists, orthospine specialists, orthoshoulder specialists and surgeons who actually understand how EDS changes the way these conditions need to be assessed and treated.
We should be sending Manitoba healthcare professionals to established EDS centres in the US to receive specialized training and bring that knowledge back to Manitoba, where they can train other healthcare professionals.
We also need better access to diagnosis, POTS testing and treatment, physiotherapy and other appropriate services.
But there is a huge problem:
Some of us are sick right now.
We cannot wait years for Manitoba to build this expertise.
I and many others are already dealing with serious medical problems. For people in urgent or potentially life threatening situations, access to specialized care outside Manitoba or Canada may be the only realistic option while Manitoba develops the expertise we need here.
So we need to do both.
Build the system Manitoba should have.
And provide emergency access to the specialized care people need right now.
That brings me to the question Manitoba needs to answer:
WHERE IS THE CARE FOR EDS/HSD IN MANITOBA?
If you have EDS/HSD, please DM me.
I want to hear what has happened to you. What care have you been able to access? What have you been denied? Have you had to travel outside Manitoba? Have you been told that care exists here, but then been unable to find anyone who can actually provide it?
And most importantly, how has the lack of appropriate care affected your life?
We need to show that this is not just my story.
There are thousands of Manitobans living with EDS/HSD. We deserve access to appropriate care too.
If you have EDS/HSD, please reach out. Join me in pushing for change.
Manitoba needs to answer one simple question:
WHERE IS THE CARE FOR EDS/HSD IN MANITOBA?
Tomas