It’s very difficult to find your footing as a teenager. Rohan Vijendran talks about the additional challenges he had to learn to dance.
Some find themselves waltzing through the complex tapestry of life with an elusive and capricious partner: Ehlers-Danlos syndrome. Imagine navigating a ballroom where the floor beneath you is constantly shifting, the music’s tempo changes on a whim, and your dance partners tend to do surprising spins and dips. This is a daily reality for her EDS sufferer, a connective tissue disease that turns the body into an unpredictable dance floor.
The EDS dance card has 13 subtypes, many of which deal with hypermobility. Many people who suffer from EDS, especially children, experience significant challenges when it comes to common things that many people can do on a whim. In my experience, I have difficulty playing simple games like soccer, struggle to hit the ball, and check my feet every few minutes to see if there are any bruises. These are just some of the things that EDS patients have to go through every day.
Amidst the complexity of living with EDS, another challenge arises: misdiagnosis. The reason I had so much trouble getting diagnosed was due to confusing dance moves where the steps didn’t match the music. At first, doctors didn’t think there was anything that needed to be diagnosed. I was just a kid with bruises and cuts. My parents and I were at a loss. We were sure something was going on and we were told it was probably in our minds. But then a light bulb went off when my geneticist ordered me to do the Beighton hyperlocomotion test and apparently it turned out I had a very rare type of EDS. She’s one in a million and she has my type of EDS. But what I often wonder is how many people have stories like mine?
