The end of the school year is always chaotic, and the arrival of warm weather, since I work on a farm, leads to plenty of outdoor chores. All of these responsibilities and the seemingly never-ending to-do lists can cause anxiety, which I manage and is a common co-diagnosis for those…
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.
Walking through the door for my first Pilates session in nearly six years, I felt a wave of nerves. The last six months had been a difficult recovery from a severely broken rib and a sprained diaphragm, injuries further complicated by Ehlers-Danlos syndrome (EDS). I was anxious that engaging…

Spring is a busy time of year for me. Not only is school racing toward the finish line, but spring chores are ramping up on the small horse farm where I live. The grass is growing, flower beds need to be tended, and a variety of other maintenance must be…
We had a teacher work day here at school in which we were encouraged to go off campus for lunch with colleagues. A small group of us headed to a local Mexican restaurant that had just opened. We were all excited to try the food. But sometimes eating out can…
This spring, my allergies have been terrible. I’ve had seasonal allergies for as long as I can remember, but the past few weeks have been some of the worst I’ve experienced in years. I was hoping that the long cold snap we had this past winter would’ve led to fewer…
Injuries, sprains, strains, and bruises are simply a part of life with Ehlers-Danlos syndrome (EDS). Sometimes I know what causes them, and other times I’m clueless. I’m not sure if it’s better to know or not. If I know, I can try to avoid those activities in the future,…
My hip hasn’t bothered me in a while. I guess that means it was about time for it to flare up and remind me that it’s there! That’s how it tends to go with me and my Ehlers-Danlos syndrome (EDS). Some ailments are constant, such as the ones in…
After my alarm went off on a recent morning, I rocketed out of bed when I realized I’d hit snooze so many times that it was more than 30 minutes past when I was supposed to be up. Racing to catch up and get out the door is never a…
I feel like I wear the same three pairs of shoes to work all the time. I don’t know if anyone else notices, but I do. Sometimes I feel self-conscious about it, but the shoes are comfortable. I’ve had issues with plantar fasciitis in the past, and I get blisters…
Some days my body sounds like Rice Krispies that have just had cold milk poured over them. Every time I move I snap, crackle, and pop! With my Ehlers-Danlos syndrome (EDS), there are times when I can’t move without making noise — though sometimes that’s from me groaning as…
I’ve written about how stubborn I am, and how I don’t let my Ehlers-Danlos syndrome (EDS) keep me from doing what I want. I don’t take no for an answer and tend to power through the situation, regardless of its impact on me. It’s a strategy I don’t recommend.
About a week and a half ago, I woke up in the middle of the night sleeping on my right side, which is always bad news. My right shoulder is badly damaged, and after spending over 20 years managing it, my body seems to know instinctively not to roll…
When I feel that sort-of-painful, sort-of-numb vibe in my right arm and shoulder, I know I’m in trouble. It’s not numb in the sense that I can’t feel it, but rather that I’m not processing the pain I know I’m experiencing. That’s when my damaged right shoulder has passed the…
Recent Posts
- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026
- 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