Monday, October 10, 2011

EDSO Is "Creating" An Expert!

"You are my first patient with Ehlers Danlos Syndrome. To be honest, I don't really know much of anything about it."

"I'm afraid there's nothing else I can do to help you."

“What do you mean there aren't any EDS specialists in Canada?"

Those are a few of the many statements someone with EDS hears from countless doctors and specialists we encounter.

Ehlers Danlos Syndrome Onatrio will be holding various fundraisers to raise money to 'create' an EDS expert in Canada.

How do we plan to do this, you say? Well... we plan to raise enough money to send one (or more) doctor(s) to the 2012 EDNF Medical Conference. There, they will attend educational seminars to expand their EDS knowledge. They will also get the opportunity to network with the world's leading EDS doctors!

We have a few doctors that have been treating Ontario EDSers on the candidate roster. These doctors would be giving up 4 days of their work/personal time to attend the conference. They would be doing this for our benefit! We hope to sweeten the deal by covering the major costs.

Our first event is being held on October 15, 2011 at
Boston Pizza,
2011 Winston Park Drive
Oakville, ON

Tickets are $20, with $10 covering food costs and the remaining $10 going to EDSO

If pizza isn't your thing or you can't make it, you're still more than welcome to Chip In. The icon is on the right hand side of the page.

Any remaining funds will be used for scholarships for deserving individuals to attend the 2012 EDNF Medical Conference and EDSO upkeep costs.

Thank you for your time, and for checking us out.

2011 EDNF Learning conference
Getting to meet and visit with online friends for real!!!

Tiffany with her heroes, EDS experts Dr. Fraser Henderson (Neurosurgeon) and Dr.Clair Francomano (Geneticist).

This summer most of the people in our EDSO group made multiple ER runs, and some of us had the luxury of surgeries and being inpatient. Thankfully we're deeply connected and take very good care of each other.

We share many of the same doctors and sometimes get together after appointments to decompress, exchange information and laugh together at the insane amount of obstacles we're constantly facing.

Holly (center) is a grad student at York University and has been conducting research on sensorimotor neuroscience. She presented her findings on EDS and visuomotor proprioception at this year's EDNF conference. Some of us were her lab-rats, and are more than happy to participate again in her next study.

Prior to the 2010 EDNF conference, a group of EDSers from Ontario was formed online where we met for real at the conference. After that, we decided there needed to be a lot more EDS awareness, research and education in Ontario. We were going to be the change. Since then, we have started to set precedents and have no desire to slow down.


  1. So glad you ladies are working on this. I attended a hospital in Ontario where a diagnosis of EDS made years earlier was dismissed as a fallacy. I was essentially left without proper treatment and re-diagnosed with a Psychiatric disorder known as PTSD. I was tortured.
    Decisions made back than have now left me crippled worse and it is a darn painful and continually uncomfortable disorder. Good luck in your education attempts.

  2. It is so hard to find any help with my EDS. I am having so many issues, and nobody to help me.

  3. Imagine thinking you are just clumsy, flat footed and accident prone with wonky knees? Although you are pretty flexible and you are seen by others as "stronger" than usual you just feel like something is wrong with you beecause your body hurts pretty bad in your back, hips, neck, elbows and knees. Some days, it feels like your your head is too heavy for your neck!
    Then an older surgical incision ruptures and a year later your aorta dissects from the brain to the kidneys and no one knows how you survived.
    You develop some pretty aweful self doubts and loathing but are simply told it is "bad luck".
    Then of course due to something else involving your others knee you see a new doctor who shakes you. He then rattles knees and twists skin and has you touch the floor from standing with your palms. Looks at an ugly scar on my chest and say's "you have a mild derivative of Ehler-Danlos."
    "If this is the result of a mild form of anything, I would hate the severe forms!" Even though I had never heard of it!.
    This is very recent happenings so of course research it and realized this disease, if I actually do have it, is insidious and horrible! So many of my mysteries and traits, my weird "sinus headaches" ulcers that were not really visible, bowel issues weird episodes of shortness of breath inability to even run after an injury 30 years ago no matter how I wanted to do it again! Not ever really fully recovering from any injury even somewhat minor! Ehler-Danlos fits the profile of my entire life and the lives of two of my adult children but I am just suspected since I have not been able to get tested yet and my children, seem to have it worse than even I might since they have the hyper mobility all over with the backwards fingers and elbows!
    This syndrome needs to become far more publicly aware! Had I been aware years ago, I would have changed careers, sought support for weird movements in joints, guarded my back and knees and looked to alternate options!
    Now, I am 57 and the chances are lower that things recover better. I am arthritic and find pain managment my goal today!
    I will though say your role to inform the medical community is of prime importance! Even when I find myself looking at people with hyper-flexible feet at the beach I wonder just how unknown this syndrome is!
    Save one person from medical misery and you are the best our society has to offer!
    Keep up the good work with what you are doing!
    In my case? I still really hope my testing rules out Ehler-Danlos!