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.
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.
Last week, I had my first physical therapy (PT) appointment for my broken rib and sprained diaphragm. Even after an initial evaluation, I wasn’t sure what to expect, and I was a bit nervous about our plan to try the Graston technique. In the end, though, it was…

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…
Sometimes managing Ehlers-Danlos syndrome (EDS) feels like choosing the lesser of two evils. Should I do something that helps me in the long run, even if it causes issues in the short term? Currently, I’m having that debate regarding kinesiology tape for my tennis elbow. It helps with the…
I often think about how my Ehlers-Danlos syndrome (EDS) is affected by the weather. I also wonder whether the biggest factor in my EDS symptoms is the weather itself or how my activities change because of it. I’ve been experiencing wild temperature swings lately, ranging from 15 F to…
The past couple weeks have been cold and stressful, so I needed a bit of a pick-me-up. I turned to a television show I hadn’t watched in a while called “The Wizard of Paws,” which follows orthotist Derrick Campana as he makes prosthetic limbs, braces, and carts for animals in…
It’s been really cold here in Virginia recently. I’m a New Englander at heart, so I really don’t mind the cold weather, but down here in the South, life isn’t set up for the kind of temperatures we’ve been having, and definitely not for snow. It’s been a struggle for…
There are times when life with Ehlers-Danlos syndrome feels like a revolving door of minor injuries and sprains. Of course, I have my chronic issues that cause problems, such as my right shoulder, right ankle, and right ring finger (apparently the right side of my body is cursed!), but then…
The last couple of weeks have been fun, but stressful. I love the holiday season, but that doesn’t mean that the business and stress of it all doesn’t get to me. I had a blast with my brother and his family, but since they live abroad, we try to…
Recently, a reader asked me about Ehlers-Danlos syndrome (EDS) support groups and other organizations, and various ways of handling daily life with EDS. That got me thinking about my own support networks and how they’ve changed over the years. It also made me wonder how others with EDS approach…
Sometimes the soreness I experience in my body seems to come out of nowhere. I’ll be fine one day and then bam, I’ll wake up the next morning feeling superstiff and awkward for no apparent reason. The other night, I went to bed tired after a long and busy day,…
I can’t believe there’s only a couple of weeks until Christmas. It feels like this year has flown by! Every year on the weekend before Thanksgiving, I spend time with my two best friends from college. They’re the kind of friends you can go weeks or months without talking to,…
Recent Posts
- 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
- 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