
Sul is a member of The Ehlers-Danlos Society’s Teen Council and this is their story.
“I grew up as someone who has experienced the effects and stigma (medical and social) of Ehlers-Danlos syndrome (EDS) from a very early age and I have accepted I will live with it for the rest of my life.
I have yet to be assigned any particular type of EDS, but the condition has taken things away from me that I didn’t even know I was supposed to have until they were just past my reach — often leaving me alone and left out of many experiences my peers enjoyed.
It wasn’t until almost a decade of this condition preventing me from doing things that I finally had enough and decided to take control — by joining a local rowing team.
Due to my symptoms, I was unable to row so my coach made me a coxswain. Through this leadership position, I fell in love with the sport and have since pursued it at a competitive level. I look forward to continuing as a coxswain at a collegiate level.
I’ve learned many lessons during my time on the crew team but perhaps the most influential has been to not let anyone define you based on your limitations. Although doctors told me I could never pursue my dreams of being on a team, I made it all the way to varsity and will continue to find ways to engage in activities I enjoy as I live with my condition.”
We’d like to say thank you to Sul and all of our Teen Council members for their dedication to helping us progress change in these complex conditions. Together, we dazzle.
You can follow Sul’s journey @stripes.with.sul