“May is Ehlers-Danlos Awareness Month and in honor, I am sharing my story. As terrifying as it is to open up about an incurable, invisible, rare medical condition, it is also freeing, because there are many of us out there who struggle. But you can’t let limitations or labels define you. We are all so much more than our diagnoses.
For much of my life, I’ve dealt with debilitating migraines, dizzy spells, breaking out in hives, severe drops in blood pressure, and my body has always been crazy-flexible. In 2015, I was diagnosed with several rare genetic disorders, the most prevalent being Ehlers-Danlos Syndrome, or EDS.
EDS is a progressive connective tissue disorder where the structure, production, and processing of our collagen is all sorts of wonky. Joint hypermobility is a characterization, meaning I am flexible beyond what is a normal or safe range of motion. So, oftentimes, my joints dislocate, which is super painful. It can happen even from picking up a cup of coffee. In fact, in the beginning of 2016, my doctors told me I was bound for a wheelchair.
But it’s 2017 and I’m still standing. More importantly, I’m still dancing. Because even though my body is a hot mess, I’m a hot mess that needs to be covered in neon and glitter. I need to be dancing, bringing the ‘sweaxy’ and continuing to push as far as I can. EDS is unrelenting and overwhelming. Some days, it is hard to stomach the fact that there is no cure. Knowing that I could end up bed-bound, with a feeding tube, unable to move, is a very scary reality. BUT, EDS does not define me.
Teaching Zumba classes is what makes me happiest in the world. When my hips or ankles dislocate, it takes time to ease them back into place and warm my body up before I can teach a class. Not only do the music and fierce moves lift my spirit, but because of Zumba classes, my body is stronger and more fit. So when I’m on the dance floor, I’m doing what I can to fight against the effects of EDS.
I have spent most of the past two years defying the odds and proving that I am so much more than a label. I didn’t sit home, focusing on the pain, waiting for wheelchairs or walkers to happen. I embraced my body, flaws and all. I sought out what makes me truly happy.
The beautiful thing about the Zumba program is that it is for EVERY body, even those of us with invisible diseases. I didn’t come to Zumba classes from the dance world nor the fitness world. I came from the mom world. I found that at the end of every hour, I was smiling ear to ear. I found happiness. My message to you is to not let your invisible illness get in the way. Don’t let it define your entire life. Happy on a dance floor – that is who I am.”
– Carolyn Rene Collins-Maragh, licensed Zumba® Instructor; highly visible force of life
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