Living with EDS has prompted positive life choices for me

EDS symptoms early on changed the trajectory of this columnist's career

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Sometimes I wonder what my life would be like if I didn’t have Ehlers-Danlos syndrome (EDS), specifically how it shaped my life choices before I knew I had it. Undoubtedly, my life would be radically different.

Prior to my diagnosis at age 22, I was an avid soccer player. While I never would’ve competed in the top division in college, I was a strong enough of a player to attract interest from university coaches when I was in high school. I knew, though, that there was no way my body could handle that kind of physical beating.

Even though I hadn’t yet been diagnosed at the time, I did know that the physical pain of continuing at the same level wasn’t sustainable.

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That prompted me to look at a variety of colleges. I ended up at a small liberal arts college, where I was lucky to earn a scholarship. I lived in a small town for the first time in my life, and without soccer dominating every hour outside of school, I was able to take horseback riding lessons for the first time.

Given the fact that I now have my own small horse farm, the decision back then to take a lesson sure stuck! While in college, I became increasingly involved with horses, which now are a central part of my life. I can’t imagine where I’d be without them and my farm community.

My freshman year in college, I started volunteering in the admissions office. That led to a salaried job for the next three years, which is how I paid for riding lessons. I also learned that I loved working with students who were deciding what to do after high school. That experience led to a career in education, specifically in college and post-graduate counseling.

Looking back, I’m amazed at how EDS, which I didn’t even know I had at the time, took my life down paths that indelibly shaped who I became. EDS isn’t fun to live with, but when I realize how it led me to where I am today — with a job I enjoy and that allows me to spend time outdoors — I wouldn’t change a thing!

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Joni Freshman avatar

Joni Freshman

I wasn’t diagnosed until I was 58. I have so much damage from the choices I made while being told no, I couldn’t possibly have it.

Jane A Willoughby Woods avatar

Jane A Willoughby Woods

Thank you for your publication. I identified with both articles in this edition of EDS News. I was diagnosed later in life and felt relief to finally have information about my lifelong struggles. Having frequent dislocations and chronic pain made me rethink my life plan too but I am grateful for the path it led me to. Information is power. I appreciate your efforts.

Terry avatar


You are very fortunate to have been diagnosed at the young age of 22. I also know my life would race been much better if I had known why I was in pain 24/7 my whole life. Diagnosed at 60. Lots of damage by that time. Good they are finally recognizing it. I also do not think it’s rare as they say. Too many people have it. Drs just called it fibromyalgia it depression. Smh.

Constance Frye Alsup avatar

Constance Frye Alsup

I suddenly thought, there has to be a reason I lost the babies and why I had multiple leg surgeries since I dislocated my knee in Scool at age 11. Hum. My journey has been rough and painful. I finally found a GENEOLIGIST at IU Riley in Indianapolis. I have several types of EDS and most worried about heart valve issues. My kids are gone, and at 70 have little fight left! Not everyone has a smoothe time. I am on a 3 year waiting list at EDS IU in Indianapolis.


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