Each morning after I wake up, I take stock of how I feel. Is my back stiff? Does it hurt? How about my shoulder? Did I sleep wrong and aggravate it? How about my plantar fasciitis? Does my hip feel stuck or out of place? While I do this…
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…

Any morning I wake up and see a heat advisory on my phone’s weather app, I know I’m in for a fun day. Or more likely the opposite. Last week, I was smack in the middle of an East Coast heat wave, and the temperatures were miserable. A heat index…
I remember watching the ball fly past my last defender and realizing I had to choose: I could either run out from the goal, in hopes of beating the other team’s offensive player to the ball and clearing it away, or get ready for a one-on-one breakaway situation. As my…
Summer means I have a break from teaching, which is great for rejuvenating myself for the next school year. But it’s also easy for me to do too much because I have more free time. That must mean I can do more, right? Wrong. To avoid taking on too much…
Over the years, I’ve found a few things that help me manage Ehlers-Danlos syndrome (EDS). Readers of this column likely know that one important thing is getting massages. It’s really the only thing that seems to help with the pain and with keeping my muscles from locking…
Sometimes the pain from Ehlers-Danlos syndrome (EDS) is just weird. I don’t have a better way to describe it. A specific area may hurt when I’m in a pain flare, but it mostly feels like a vague “pain bubble” that I’m sort of immersed in. But occasionally, I’ll have…
While driving to work recently, I realized I was in one of my Ehlers-Danlos syndrome “twisted pretzel” phases. That’s what I call it when my body feels out of whack. I often notice it when I’m driving and realize that I’m not sitting evenly. This time I felt that…
A few weeks ago, I wrote about how I wound up with a massive bruise on my left arm, courtesy of a grumpy horse. As much as I dislike the huge bruises I get, I also find them interesting. But I didn’t realize until I read the comments on…
Sometimes I wonder what my life would be like if I didn’t have Ehlers-Danlos syndrome (EDS), specifically how it shaped my life choices before I knew I had it. Undoubtedly, my life would be radically different. Prior to my diagnosis at age 22, I was an avid soccer…
Even though I’m aware of my physical limitations, I’m often bad about respecting them when doing so would keep me from completing the task at hand. I’m probably a good Ehlers-Danlos syndrome (EDS) patient in the sense that I stay as active as possible. But on the flip…
Some weeks just feel eternal. It’s like you’re clawing your way along until Friday, desperate for a chance to get some rest and downtime to prepare for the next week. Sometimes, though, weekends aren’t a break and one week blends right into the next. That’s what happened to me recently…
Apparently, I’ve been compiling an unintended list of stupid things not to do when you have Ehlers-Danlos syndrome (EDS). First I fell out of a Kubota tractor while driving through a field. Then I was bitten on the arm by a grumpy mare who was having hoof pain…
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