Summer means I have a break from teaching, which is great for rejuvenating myself for the next school year. But it’s also easy for me to do too much because I have more free time. That must mean I can do more, right? Wrong. To avoid taking on too much…
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…

Over the years, I’ve found a few things that help me manage Ehlers-Danlos syndrome (EDS). Readers of this column likely know that one important thing is getting massages. It’s really the only thing that seems to help with the pain and with keeping my muscles from locking…
Sometimes the pain from Ehlers-Danlos syndrome (EDS) is just weird. I don’t have a better way to describe it. A specific area may hurt when I’m in a pain flare, but it mostly feels like a vague “pain bubble” that I’m sort of immersed in. But occasionally, I’ll have…
While driving to work recently, I realized I was in one of my Ehlers-Danlos syndrome “twisted pretzel” phases. That’s what I call it when my body feels out of whack. I often notice it when I’m driving and realize that I’m not sitting evenly. This time I felt that…
A few weeks ago, I wrote about how I wound up with a massive bruise on my left arm, courtesy of a grumpy horse. As much as I dislike the huge bruises I get, I also find them interesting. But I didn’t realize until I read the comments on…
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…
Even though I’m aware of my physical limitations, I’m often bad about respecting them when doing so would keep me from completing the task at hand. I’m probably a good Ehlers-Danlos syndrome (EDS) patient in the sense that I stay as active as possible. But on the flip…
Some weeks just feel eternal. It’s like you’re clawing your way along until Friday, desperate for a chance to get some rest and downtime to prepare for the next week. Sometimes, though, weekends aren’t a break and one week blends right into the next. That’s what happened to me recently…
Apparently, I’ve been compiling an unintended list of stupid things not to do when you have Ehlers-Danlos syndrome (EDS). First I fell out of a Kubota tractor while driving through a field. Then I was bitten on the arm by a grumpy mare who was having hoof pain…
Over the years, I’ve tried a variety of ways to make myself more comfortable at work, where I’m a teacher and college counselor. With my Ehlers-Danlos syndrome (EDS), too much time in any one position, whether sitting or standing, can cause discomfort. My workdays fluctuate between lots of time…
Last week, I was surprised when building a ramp for my dog didn’t cause my pain to flare up. This week, I’m shocked because I’m in the middle of a pain flare, and I don’t know why! That’s pretty much the epitome of Ehlers-Danlos syndrome (EDS). It comes…
Just when I think I know how my Ehlers-Danlos syndrome (EDS) will react in certain situations, I’m always surprised at what actually happens. My dog Pepper has recently been having trouble climbing stairs. She’s 13, and I’ve had her for two years. I knew that at some point she’d…
Recent Posts
- Dentists may spot EDS signs during routine exams, study finds April 23, 2026
- Attention, cognitive issues tied to pain, body regulation problems in hEDS April 16, 2026
- Why I am no longer thinking of myself as ‘a mess’ due to EDS April 14, 2026
- New study suggests hypermobile EDS and HSD may share a disease spectrum April 9, 2026
- 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
- I’m seeing good results from fascial counterstrain therapy March 24, 2026
- Heavy menstrual bleeding affects 9 in 10 women with EDS: Study March 19, 2026
- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026