The other week, I felt a twinge in my back when I woke up, but I hoped I’d just slept funny and it would soon go away. As the day went on, though, the slight discomfort grew until my back became quite painful. Getting up from a chair was awkward,…
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.
Over the past several weeks, I realized just how exhausted I was as winter break approached. As a teacher, I’m fortunate to have time off for the holidays, and this year I needed it more than ever. Instead of traveling, I spent my break catching up on things at home,…

After a rough couple of weeks, the past few days have been an exercise in remembering to listen to my body and take the time I need to heal, as I’ve been recovering from what was likely a case of COVID-19 and a nasty fall caused by the…
Two weeks ago, I wrote that I was struggling to get back into the swing of the school year. It’s always a tough transition, but this year, I was dragging more than usual at my job as a teacher and college counselor. But I didn’t dwell on it and…
Last week, an athletic trainer I was talking to asked why I had kinesiology tape on my leg. I told her I have plantar fasciitis and mentioned something about my Ehlers-Danlos syndrome (EDS). To my surprise, she said, “Wow, I didn’t know you had that. Actually, I…
After more than 10 years of working in schools, I should be better about managing my Ehlers-Danlos syndrome (EDS) through the transition from time off in the summer to the academic year in fall. But every year it seems to take me by surprise. Since I love my job,…
As I drove out of the pit and started making my way around the first curve of the track, I was both nervous and excited. Much to my surprise, the head of the school where I work had decided on some unique back-to-school preparations. Instead of the usual team bonding…
As I stress on the phone about how I have no idea what my schedule looks like for the next day and I don’t know what I’m going to do, my mom calmly cuts in and says, “Go take a nap. If it’s still a problem when you wake…
My shoulder is a common source of Ehlers-Danlos syndrome (EDS) pain. It hasn’t been the same since I had a terrible soccer injury as a teenager, before my diagnosis. Usually, my EDS pain affects the same muscles that my original injury directly affected: my trapezius…
Walking through the kitchen at my mom’s house recently, I was too busy watching her new kitten, Phineas, play to pay attention to where I was going. I was also barefoot — something that’s rare for me since developing plantar fasciitis, as it’s usually too painful to walk without…
It’d been a great day, and despite my Ehlers-Danlos syndrome (EDS), I wasn’t feeling particularly sore. My brother and niece were visiting, and we’d gone to a botanical garden with a kids area. It had a splash pad, sensory garden, and other age-appropriate ways for kids to interact with…
Each morning after I wake up, I take stock of how I feel. Is my back stiff? Does it hurt? How about my shoulder? Did I sleep wrong and aggravate it? How about my plantar fasciitis? Does my hip feel stuck or out of place? While I do this…
Any morning I wake up and see a heat advisory on my phone’s weather app, I know I’m in for a fun day. Or more likely the opposite. Last week, I was smack in the middle of an East Coast heat wave, and the temperatures were miserable. A heat index…
Recent Posts
- I’ve been slowing down lately while continuing to recover from a fall January 13, 2026
- Compression garment use may reduce pain in hypermobile EDS, HSD: Study January 8, 2026
- 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