It’s hard enough finding your footing as a teen. Rohan Vijendran tells us about an additional challenge he had to learn to dance with.
In the intricate tapestry of life, some individuals find themselves waltzing through existence with a partner both elusive and capricious – Ehlers-Danlos Syndrome. Imagine navigating a ballroom where the floor beneath you constantly shifts, the music changes tempo at a whim, and your dance partner has a penchant for surprising spins and dips. This is the daily reality for those with EDS, a connective tissue disorder that turns the body into an unpredictable dance floor.
There are 13 subtypes on the EDS dance card– many of which deal with hypermobility. The many people who struggle with EDS, especially kids, experience huge challenges when it comes to common things that many can do on a whim. In my experience, playing a simple game like soccer is a challenge, struggling to hit the ball, and checking my leg every few minutes to see if I have a bruise. These are just a fraction of things that people with EDS have to go through daily.
Amidst the complexities of living with EDS, another layer of challenge arises – misdiagnosis. My struggle with getting a diagnosis was due to a confusing dance, where the steps didn’t match the music. At first, doctors didn’t think there was anything that needed diagnosing–I was just being a kid getting bruises and cuts. My parents and I were in limbo–feeling sure something was going on but being told it was likely in our minds. But then a geneticist had me do the Beighton hypermobility test and a lightbulb went off, apparently I had EDS—a very rare type of EDS. One in a million people has my type of EDS. But one thing I often wonder, is how many people have a similar story to mine?