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…
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.
One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can…

“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…
This spring, my allergies have been terrible. I’ve had seasonal allergies for as long as I can remember, but the past few weeks have been some of the worst I’ve experienced in years. I was hoping that the long cold snap we had this past winter would’ve led to fewer…
Injuries, sprains, strains, and bruises are simply a part of life with Ehlers-Danlos syndrome (EDS). Sometimes I know what causes them, and other times I’m clueless. I’m not sure if it’s better to know or not. If I know, I can try to avoid those activities in the future,…
Recent Posts
- Global study reveals the complex web of health issues linked to hEDS February 5, 2026
- 73% of EDS patients second-guess pain, often after clinician skepticism: Study January 29, 2026
- My EDS pain seems to operate by different rules each day January 27, 2026
- New study urges platelet testing to manage bleeding risk in EDS January 22, 2026
- Another EDS flare is a real pain in the neck January 20, 2026
- Gut issues often drive hEDS patients to restrict their diets January 15, 2026
- I’ve been slowing down lately while continuing to recover from a fall January 13, 2026
- Compression garment use may reduce pain in hypermobile EDS, HSD: Study January 8, 2026
- I’m thankful for the lessons learned and progress made in 2025 December 23, 2025
- Walking saps more energy from hypermobile EDS, HSD patients: Study December 18, 2025