When I felt the soreness in my back a few weeks ago, I knew it felt different. It was still muscle pain — I hadn’t injured my back in an out-of-the-ordinary way, at least not that I knew — but it didn’t feel the same. Usually with my Ehlers-Danlos…
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.
It’s been eight months since a fall off my horse led to a badly broken rib and plenty of associated muscle and soft tissue damage. While I’ve made huge strides in my recovery, there are still a few things that aren’t quite back to normal — or at least my…

While I’ve written before about tips for traveling with Ehlers-Danlos syndrome (EDS), I learned some new things recently that were helpful for traveling internationally. I was surprised at how just a few items made a recent trip to Europe much easier. They include the following: A good travel pillow:…
Before leaving for my recent trip to Europe, I was worried about being able to eat properly while there. Given my food sensitivities from Ehlers-Danlos syndrome (EDS) and alpha-gal syndrome, it can be challenging to dine out in the U.S., even when I know the language. How would…
“We’re just going to take a quick run into town. Want to come?” my aunt and cousin, with whom I was staying while in Chamonix, France, asked. I knew we’d be walking, as Chamonix is a pretty small and mostly walkable area in the Alps. I was happy to get…
The past few weeks have been busy. I’ve missed writing my last two columns because of a trip abroad to spend time with my brother and his family. He’s a school administrator, and his wife is currently staying home with their young daughter. They live in Europe and usually come…
Sometimes when I’m lying down, I take stock of how my body feels. Many people do this as a technique to relax or relieve stress, but I’m not sure that works when, like me, you have Ehlers-Danlos syndrome (EDS). With EDS, doing a mental body scan makes you focus…
As I woke up and realized that I’d been sleeping on my right side, I started inwardly cursing. Nothing good ever comes from me rolling over in my sleep and landing on my right side. In fact, it’s usually a recipe for severe pain, as my badly damaged right shoulder…
Not everything that happens to me is related to my Ehlers-Danlos syndrome (although much of it is!). Sometimes accidents happen simply because I’m human. My current nemesis is a ganglion cyst in my right index finger, courtesy of the fact that I accidentally dropped a square beam (6…
As I stood up for what felt like the 50th time that day, my knees, back, and hips protested loudly. When I moved into my house awhile back, I put down waterproof plank flooring over the hardwood that was there. The original was nice, but it needed to be refinished…
The end of the school year is always chaotic, and the arrival of warm weather, since I work on a farm, leads to plenty of outdoor chores. All of these responsibilities and the seemingly never-ending to-do lists can cause anxiety, which I manage and is a common co-diagnosis for those…
Spring is a busy time of year for me. Not only is school racing toward the finish line, but spring chores are ramping up on the small horse farm where I live. The grass is growing, flower beds need to be tended, and a variety of other maintenance must be…
We had a teacher work day here at school in which we were encouraged to go off campus for lunch with colleagues. A small group of us headed to a local Mexican restaurant that had just opened. We were all excited to try the food. But sometimes eating out can…
Recent Posts
- Eating challenges common among women with self-reported EDS June 4, 2026
- I know my EDS, so advocating for myself after my injury was the right call June 2, 2026
- Hormone blocker reduces ruptured blood vessel risk in VEDS mouse study May 28, 2026
- My latest EDS pain flare felt different — in the best way May 26, 2026
- Celiprolol may help lower risk of fatal vascular complications in vEDS May 21, 2026
- When it comes to EDS issues, there’s often no rhyme or reason May 19, 2026
- Swallowing issues may complicate meals, daily life for people with hEDS May 14, 2026
- Dismissive doctors cause EDS patients to minimize their own pain May 7, 2026
- The benefits of fascial counterstrain therapy just keep accumulating May 5, 2026
- Guest Voice: With EDS, I accept what’s challenging, embrace what’s possible May 4, 2026