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…
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.
I’ve reached a plateau in my recovery from a badly broken rib and sprained diaphragm that’s been complicated by my Ehlers-Danlos syndrome (EDS), and I’ve been searching for what to do next. Recently, I went in for an evaluation with a physical therapist I’ve known for years, who…

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;…
While you likely know by now that I have horses, you may not realize that I live on a small, private, horse-breeding farm. The owner is active duty in the military, so I have my own place on the farm that allows me to help whenever needed. For non-horse…
I’m not good at accepting my limitations. While I’ve gotten better about it over the years, I’m stubborn, and if EDS says I shouldn’t do something, my usual response is to find a way around it. I’m active, athletic, and love being outside. Anything that gets in the way…
Back in December I started Pilates. Wow. Seriously, I love it. I never imagined that I’d enjoy working out in the traditional sense, but this is different. In November I took a fall off my horse Spotty (before his injury), badly spraining my right ankle and my left MCL.
Recent Posts
- New study finds autism tied to worse health outcomes in hEDS, HSD March 12, 2026
- New study finds higher vascular complication risk in males with vEDS March 5, 2026
- Zeroing in on ‘fight or flight’ as the reason for my slow recovery from injury March 3, 2026
- Loneliness strongly linked to worse physical and mental health in hEDS February 26, 2026
- The ‘aches and pains forecast’ that validated my EDS symptoms February 24, 2026
- HSD, hEDS tied to diagnostic delays, poor quality of life in aging women February 19, 2026
- I’m trying different types of physical therapy to keep making progress February 19, 2026
- Genetic changes across 3 biological systems may drive hypermobile EDS February 12, 2026
- Are fatigue, pain, and soreness an EDS flare-up or a winter illness? February 10, 2026
- Global study reveals the complex web of health issues linked to hEDS February 5, 2026