My Journey Navigating EDS Complications
Welcome here! My name is Bethany and I live in Manitoba, Canada. My life has always been a bit of a medical mystery that local doctors haven’t can’t figure out. I’ve started consulting with experts around the world who have experience in the EDS, ME/CFS, and post-exposure realm which has provided a lot of answers, but there are still some missing pieces to the puzzle.
I’ve made this website to update friends, family, my medical team, and doctor’s doing research related to the rare and misunderstood EDS, concussion, and post exposure complications I am experiencing.
A quick summary for anyone who is new here: I experienced a variety of medical challenges as a kid, but nothing that really stopped me from living my life. I have always been a ball of energy, wishing I could be in multiple places at once so I never had to miss out on a social gathering. In 2017 I crashed while snowboarding and started experiencing significant head and neck pain. In 2020 following a variety of exposures (stingray sting, H2S gas exposure, COVID, an unknown flu-like illness) and another mild whiplash accident, I started experiencing stroke like symptoms. When local doctors couldn’t figure out what was happening, everything was labelled as psychosomatic.
I kept searching for answers and was eventually diagnosed with Ehlers Danlos Syndrome (EDS). I started a few medications, and was able to begin working again, while searching for answers as to what the underlying cause (ie EDS comorbidities) of everything happening was. Fast forward to fall 2024 when I my mobility and cognitive functioning declined significantly. I was diagnosed CCI and a Chiari Malformation, and had stem cells injected into my cervical spine through the back of my throat in December 2024. I saw some mild improvement for a few months, followed by increased backpain and bladder/bowel symptoms. In Spring I got sick again with a virus and my crushing fatigue got significantly worse. I kept searching for more answers and was eventually also diagnosed with a tethered cord as well as severe AAI. I plan to travel to Spain for detethering and craniocervical fusion in October 2025.
As of summer 2025 I am mostly bed bound relying on daily IV fluids and supplementary oxygen to get through my day. I am struggling with numerous symptoms related to cervical medullary syndrome, suspected mild cerebral hypoxia, and intense MCAS reactions.
Snapshots of My Journey
Support My Medical Journey
Medical expenses are adding up as I prepare for cranialcervical fusion and detethering surgeries which are not being covered by my local public health system. Friends and family have started a fundraiser for me, check it out if you are interested in contributing.
Bethany's Medical Updates
We’re finally home
After nearly 2.5 months in Barcelona (about double the time we originally anticipated) we’ve made it back to Winnipeg! I’m still processing how I feel about it, there are so many emotions: grateful things with my stomach infection and subsequent antibiotic reaction...
I’ve been pretty sick
I can’t believe it’s already been two weeks since I’ve been discharged from the hospital post surgery! The first week was nothing short of amazing, I went out for a short walk everyday, and Sasha and I went to a few cafes. I even rolled in my wheelchair to a store by...
I’ve been discharged from the hospital
After two weeks in the hospital, I’m out! I’ll be recovering for a bit before we fly back to Winnipeg, if all goes as planned we will get back November 17th. Emotionally I’ve got a lot to process. Writing helps, but for today…I’m not quite ready to share too much....
So much progress, tears of joy
First of all - I’M WALKING!!! (it’s not that I had fully stopped walking pre surgery, but I was constantly falling when I did and I had the slowest, most awkward/painful gait…distances I was able to walk were VERY short). The past few days have flown by so fast. Most...
I stood up
I stood up today for the first time since surgery! Still a very long road ahead, but today is exactly what I needed…especially after yesterday which was a really tough pain/med reaction day. I’m guessing that I’ll be in the hospital another 5ish days, but we’ll...
Surgery is Complete!
From Vicki (Bethany's mom): Bethany is out of surgery and will be in the ICU for 24 hours, then moved to her room at the hospital. We were surprised when Sasha got the call from Dr. Gilete shortly after 5:30 pm - 2 1/2 hours earlier than expected! We quickly got ready...