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…
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.
It’s hard to believe that we’ve reached the end of the semester at the school where I work. I’ve been able to fit in a few physical therapy sessions for my broken rib and sprained diaphragm — which have had a cascade of effects thanks to my Ehlers-Danlos…

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.
It’s been a few weeks since Spotty received his diagnosis. My vet came out to look at my horse and go over ultrasound images taken by my orthopedic specialist at the referral hospital. We came up with a game plan. Although the doctor who diagnosed him advised six to…
Some days simply suck. There’s no way around it. You get bad news, things don’t go your way, you just have a generally bad day. One particular day a few weeks ago would definitely qualify. I took my current competition horse, Spotty, to an equine veterinary specialist for an evaluation…
One way of managing a chronic disorder, particularly one that affects physical mobility and causes constant pain, is figuring out what treatment works for you. What helps me may not benefit you, and vice versa. I believe that sometimes a little trial and error…
Sometimes, we may have so many levels of embedded issues that it can be difficult to know where to start. For my horse Arti and me, massage and acupressure were critical to physical recovery. I don’t remember how I stumbled upon my first massage therapist, but I’m thankful…
To know me, it’s important that you know a bit about my past and the journey to my current style of Ehlers-Danlos syndrome (EDS) management. So, in my next few columns, I’ll cover my history and how various experiences helped me learn the ways I manage EDS. One…
My 22-year Journey to Diagnosis
Ten years ago, at age 22, I was diagnosed with Ehlers-Danlos syndromes (EDS). I’d known there was something “wrong” with me long before I was 22, but despite having a doctor in the family who had been trying to figure out the mystery with several colleagues since I was…
Recent Posts
- 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
- 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