I have worked with children and adults in Queensland and in the U.K. In 2017 I started working with two teenage girls who have EDS. It was my first introduction to connective tissue disorders. Shockingly, I was not exposed to any hypermobility disorders even when I was at university, studying alongside the Physio students. I confessed this to these girls and their beautiful Mum and they gently educated me and held space for me while I tried to read as much as I could about EDS, specifically hEDS (as this was the girls' diagnosis). From working with this beautiful family, word spread and I have been privileged to serve many individuals with hypermobility conditions in Queensland. Talking with these individuals, I kept hearing similar, traumatic journeys to diagnosis of their hypermobility conditions and was eager to identify the gap... why are these patients not being listened to? Their lived experiences of what is happening in their bodies not being valued? What can we do about this?? Consulting the literature revealed a huge gap in the research about Australian patient's journeys. My hope with this research is that I might shine a light on the journey to diagnosis of EDS for women living in Australia, and possibly identify next steps to change the future journey for all hypermobile Australians, so that self-identities can remain intact, the experiences of hypermobile Australians can be validated and valued and that future hypermobile Australians might not need to fight so hard to be heard.
