I’ve said many times that chronic fatigue is one of the toughest parts of living with Ehlers-Danlos syndrome (EDS). It’s so tough to wake up just as exhausted as I was when I went to sleep. I’ve noticed recently, though, that my fatigue is a little bit…
Black and Blue Ribbons
— Karen Del Vecchio

An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her writing.
I suspect that many of us with chronic conditions use self-deprecating humor to cope with our frustrations. For me, it’s a way to show others that while my Ehlers-Danlos syndrome (EDS) can be challenging sometimes, it won’t keep me from doing what I want to do. A few…

“Hey, how did you get that bruise on your face?” I’ve probably gotten that question at least a dozen times in the past few days, and I’m sure many more wanted to ask me but didn’t. It’s not a big bruise — maybe the size of a dime — on…
Over the past year and a half or so, my horse Cherry has been through a lot. Back in December of 2021, we found out she had some pastern arthritis going on, but that wasn’t unusual for a horse then 14 years old. We helped her with anti-inflammatory medication…
Heading back to work at school at the end of summer is always an adjustment. As a college counselor and high school history teacher, having summers off is great, but it means quickly getting back into the swing of things. I try to make the most of my time during…
A few weeks ago, while walking through the barn at the farm where I live, I felt a twinge in the bottom of my right foot. I ignored it, figuring I’d probably just taken a funny step. But as the day went on, it bothered me more and more,…
It’s hard to believe that I head back to work soon as a college counselor and history teacher in high school. I enjoy my job, so while it’s great to have time off to recharge over the summer, it’s also fun to go back to school. It reminds me…
I was able to take a few days recently to visit my extended family. It’s always nice to see my aunts, uncles, cousins, and grandparents, and while we don’t typically plan any big outings, we always enjoy spending low-key time together. Many of us have food allergies or other…
Note: This column describes the author’s own experiences with anti-inflammatories. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For someone who daily manages chronic pain, courtesy of Ehlers-Danlos syndrome (EDS), I’m surprisingly bad at it. Sometimes I don’t manage…
I’ve mentioned before that I’ve never met anyone else with Ehlers-Danlos syndrome (EDS) in person. That’s one of the reasons I’ve enjoyed writing this column: It’s allowed me to connect with others managing similar health issues. Recently, however, I met someone else with EDS! My brother and his family…
After reading my column last week about a grueling high school soccer match that ended with me collapsing in exhaustion, unable to breathe, someone asked if my coaches had pushed me too hard. The answer is no. Actually, if there was something to blame for my teenage decision to…
I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe. I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the…
Last week’s column about my hip pain got me thinking. I badly injured my right hip when I was 16 or 17 years old, before my diagnosis of Ehlers-Danlos syndrome (EDS). I’m not sure if I had hip pain prior to that, but I’ve had issues with it…
Recent Posts
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- Why I am no longer thinking of myself as ‘a mess’ due to EDS April 14, 2026
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- Overcoming my fear of pain to get back on the horse — literally April 7, 2026
- Taking proactive measures helped me better manage my EDS pain March 31, 2026
- New collaboration launched to improve diagnosis and care for EDS, HSD March 26, 2026
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- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026