I’m pretty sure this is the longest I’ve gone without a massage since I learned that they’re critical to my pain management and well-being. Unfortunately, it doesn’t appear that I’ll be getting one anytime soon. While I’m thankful I’m still functional without massages, I can’t say I’m comfortable. When…
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.
Over the past several weeks, I realized just how exhausted I was as winter break approached. As a teacher, I’m fortunate to have time off for the holidays, and this year I needed it more than ever. Instead of traveling, I spent my break catching up on things at home,…

Finding Positivity in Cooking
As I wrote in a recent column, one upside to all the extra time spent at home is that I’ve gotten to spend more time on activities I really enjoy but usually get squeezed out by the lack of time in my busy life. Two weeks ago, I discussed…
Here in Virginia, all nonessential businesses have been closed for several weeks. Frustratingly, I’m unable to access my two main therapies — massage and Pilates. Both of these activities are critical to my pain management, as massage helps to relax my tight muscles and Pilates remind my body…
Like everyone right now, my life and my therapies have been upended by the coronavirus. While it’s easy to get bogged down in all the stress and seemingly all-consuming fear (especially if you turn on the television), the forced downtime has some positives if we remember to look for…
In this time of uncertainty, stress and anxiety (a very common co-diagnosis with Ehlers-Danlos syndrome) management are critical to my self-care. Like virtually everyone else, my life has been a bit upended recently. But I’m trying to make the best of it that I can, while at the same…
It’s hard to believe that only a week has passed since I wrote my last column. Everything is so different that it feels like months ago, not days. In the interim, COVID-19 has turned everyone’s world here in the U.S.
One of the many unusual issues that come with having Ehlers-Danlos syndrome is the way that I can injure myself and not even know how I did it. That sounds baffling to most people, but for those with EDS, it’s not uncommon to find you have bruises you weren’t…
As I’ve mentioned in previous columns my shoulder is probably the most damaged joint in my body. When I was about 15, I dislocated it, broke my collarbone, tore my trapezius muscle, and…
I love snow. It doesn’t snow very often where I live, but I sure enjoy when it does. We got about 5 inches of snow last Thursday. I work as a college counselor at a private high school, so I benefited from the decision to close school on Friday. A…
Presidents Day is a nice three-day weekend to have in the middle of winter and a good time to recharge. As much as I hate to admit it, the chronic fatigue from Ehlers-Danlos syndrome (EDS) wears me down. The breaks I get working…
We’ve had a very strange “winter” so far here in the mid-Atlantic. I used quotation marks because we’ve barely had a winter. We’ve only had a few days of significant cold. Otherwise, it’s been bizarrely warm — and wet. My region has had so much rain recently that I’m…
I try hard not to be negative or to complain too much. Overall, my Ehlers-Danlos syndrome (EDS) is not as bad as it could be, and I’ve found ways to manage most of my symptoms. I usually can do what I enjoy with a bit of creativity. Still, I…
Recent Posts
- 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
- My first physical therapy session went better than I’d hoped December 16, 2025
- People with EDS who have severe pain more likely to use cannabis, cigarettes 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