My last column on my Ehlers-Danlos syndrome (EDS) pain sparked many comments, and one of the most interesting discussions was about whether EDS is progressive. I’m going to share why I say it’s not, but also why I understand those who believe it is. When I said that…
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.
Sometimes I feel like my Ehlers-Danlos syndrome (EDS) is just plain weird. I can’t always figure out what’s going on or why, which makes it harder to manage. Recently, I’ve been waking up with a stiff neck and back, and sometimes my muscles feel shaky, as if I haven’t…

I felt like a knife was stabbing me just above my eyes, and I groaned inwardly in frustration at the realization that my seasonal allergies were acting up again. Recently, I’ve experienced some of the worst allergy symptoms I’ve had in years, and coupled with my Ehlers-Danlos syndrome (EDS),…
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…
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…
Recent Posts
- Severe pain linked to more cannabis, cigarette use in Ehlers-Danlos patients December 11, 2025
- Trying to understand and manage changing trends in my health December 9, 2025
- Connective tissue damage is severe when EDS meets joint disease December 4, 2025
- My healing journey continues after a physical therapy evaluation December 4, 2025
- Treatments fail to ease muscle, joint pain for most with hEDS, HSD November 20, 2025
- Acknowledging the setbacks in my EDS healing journey is hard work November 18, 2025
- An old EDS injury leads to a miracle pop and free shoulder movement November 11, 2025
- Novel procedure used to repair aneurysm in teen with vEDS November 6, 2025
- My unique EDS needs make it crucial to advocate for myself November 4, 2025
- High pressure in skull may be rare sign of Ehlers-Danlos October 30, 2025