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.
Dear readers, After seven years and over 300 columns, it’s time for me to say goodbye. Through this column, I’ve gotten to connect with other amazing people with Ehlers-Danlos syndrome (EDS), and I’m certain I’ve learned more from you all than you have from me. Your comments validating my…

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
- Avoiding the painful consequences of dental cleanings with hEDS August 11, 2026
- Chronic pain condition 10 times more likely for those with EDS, per study August 7, 2026
- Nearly half of EDS patients report moderate to severe pain at diagnosis July 31, 2026
- Pelvic muscle, nerve dysfunction may drive urinary symptoms in hEDS July 24, 2026
- Study finds higher allergy rates in children with hypermobile EDS July 17, 2026
- Hypermobility signs common in women with pelvic pain, study finds July 10, 2026
- Signing off after 7 great years as an EDS columnist July 9, 2026
- Psychiatric drugs don’t affect heart rhythms in hEDS, study finds June 25, 2026
- hEDS patients report less pain with long-term medical cannabis use June 18, 2026
- I’m trying to be patient with my healing process under an unusually hot sun June 16, 2026