Every time I think that maybe I’ve figured some things out with my Ehlers-Danlos syndrome (EDS), it’s like my body says, Nope! Just kidding. Let me do something completely different! Since EDS generally isn’t progressive and varies for each person who has it, we can have trouble knowing…
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.
Walking through the door for my first Pilates session in nearly six years, I felt a wave of nerves. The last six months had been a difficult recovery from a severely broken rib and a sprained diaphragm, injuries further complicated by Ehlers-Danlos syndrome (EDS). I was anxious that engaging…

As I stood in front of the new students during orientation last week, I tried to ignore my aching knees. Faculty and staff were lined up on the basketball court, where we took turns introducing ourselves to the freshmen and transfer students joining us this year. I tried to stand…
For teachers and students in much of the U.S., it’s that time of year again! As a teacher, I’m back to work already, getting ready for another school year to begin. While in some ways it’s nice to have summers off, I miss the routine that comes with the school…
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…
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…
Recent Posts
- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026
- New study finds autism tied to worse health outcomes in hEDS, HSD March 12, 2026
- New study finds higher vascular complication risk in males with vEDS March 5, 2026
- Zeroing in on ‘fight or flight’ as the reason for my slow recovery from injury March 3, 2026
- Loneliness strongly linked to worse physical and mental health in hEDS February 26, 2026
- The ‘aches and pains forecast’ that validated my EDS symptoms February 24, 2026
- HSD, hEDS tied to diagnostic delays, poor quality of life in aging women February 19, 2026
- I’m trying different types of physical therapy to keep making progress February 19, 2026
- Genetic changes across 3 biological systems may drive hypermobile EDS February 12, 2026
- Are fatigue, pain, and soreness an EDS flare-up or a winter illness? February 10, 2026