The past two weeks have been a bit crazy. The owner of the farm where I live had ACL and meniscus reconstruction surgery, so I’ve been doing more farm chores, like I do when she’s away. As I’ve talked about in earlier…
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…

Last week, I shared a positive update about my new horse, Cherry. A few days later, Spotty had his six-month checkup for his ligament injury. We got good news from the vet! He’s healing well enough that we can move to the next phase of his rehab,…
Last weekend was my first show after falling off my horse last November and badly spraining my right ankle and left MCL. It also was my first show with my new horse, Cherry.
Pants. For many years, women rallied for the ability to wear pants instead of skirts and dresses. As an extremely active individual, most of the time I fall into the category of women who prefer to wear pants rather than skirts. I get tired…
Balancing Sleep and a Busy World
Perhaps one of the toughest things about Ehlers-Danlos syndrome (EDS) is the chronic fatigue. It’s invisible, so those around you often don’t understand, and we live in a fast-paced world where there just aren’t enough hours in the day. I work full time as a college counselor at a…
As I’ve shared before, Pilates has been an enormous help in managing my Ehlers-Danlos syndrome (EDS). Although I was introduced to it as recently as December, I have noted improvements in my pain level after only a few sessions. The fact that I can actually do Pilates doesn’t make…
When you live on a farm, you are witness to many bizarre events. Animals are amazing and wonderful, but they have their moments and a baffling knack for getting into unusual situations. I have an apartment on a 17-acre horse farm that also has pigs, ducks, chickens, dogs, cats,…
I can manage to do most of what I want to, despite my Ehlers-Danlos syndrome. Sometimes, though, I have to get creative to pull it off. Because my joints are too loose, my muscles overcompensate by tightening up — that’s one of the reasons why massage is so helpful.
Overall, things have been going great in my life. My new horse Cherry is learning quickly, my other horse Spots is healing, and Pilates and massages generally keep me pretty well put together. Nevertheless, at times my body decides it just doesn’t feel like cooperating and rebels. As…
Back in November when I fell off my horse Spotty, I badly sprained my left medial collateral ligament and my right ankle. I could barely walk. Limping was entertaining because I didn’t have a “good” leg to limp on. Crutches wouldn’t have helped — with no good leg, there…
One common issue that many people with an Ehlers-Danlos syndrome (EDS) deal with is that we “look normal.” While I’m grateful that it’s not blatantly obvious to most people that I have EDS, there are times when it can make things awkward. That well-meaning person who says, “One day you’ll…
In the intervening weeks since my competition horse Spotty was diagnosed with a disorder affecting his legs, I realized that if I wanted to continue to improve my riding and be able to compete on occasion, I’d have to look for another horse. Now don’t worry, Spotty isn’t going anywhere;…
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