By Maya-ray, EDS, Scheuermanns, BlueRubber Bleb Syndrome, United Kingdom, March 16, 2021
I am 19 years old and a GB Team kayaker I write a blog on Facebook called Can u Kayak? That has lots of followers. I was diagnosed with EDS at about the age of 7 after seeing lots of different doctors, one of whom said there was nothing at all wrong with me and that I just wanted to be off school. I was later diagnosed with EDS by one of his colleagues and my parents put a complaint into the hospital about the first doctor. I after several more referrals was diagnosed with Blue Rubber Bleb syndrome a rare vascular disorder, Scheuermanns a painful disease of the spine where the spine doesn't grow properly. I have Dyspraxia too, I have Asperger and stomach issues which still haven't been explained possibly due to EDS. I had a tethered spinal cord and after surgery I was left with nerve damage to my bladder and left leg.
I ended up being Home Educated because of my many issues and time away from school but this meant I was able to start College a year early and then went on to University. Throughout all this my passion has been kayaking, whilst also raising awareness of rare and invisible diseases with my blog. I qualified twice to represent team GB in two World championships with no concessions for my disabilities competing against able bodied athletes. I am also a qualified coach and will be working with the GB team coaches as soon as Covid allows to further advance my coaching qualifications. I am also a swimming teacher.