For the first time in years, I didn’t go anywhere at all during my two weeks of winter break from my work as a teacher and college counselor. Usually I visit extended family, but a variety of factors meant that just didn’t happen this year. With a rare stretch of…
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.
One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can…

I’m pretty sure that my extreme stubbornness is one of the ways I persevere in managing my Ehlers-Danlos syndrome, as well as part of the reason I have pain flares. Recently, my life has been crazy busy. I’ve moved and been trying to get all my teacher…
As a teacher, I couldn’t be more ready for winter break. And I’m not alone: Though we still have a few days before we’re done for a while, the students and staff can’t wait, either. I’m overtired, stressed out, and sore. And while I’m guessing many of my colleagues feel…
Over the past few weeks, I’ve been doing some necessary maintenance on the farm where I live: working outside on plant beds, fixing fences, replacing a broken light fixture, and more. These types of activities tend to make most people sore, regardless of whether or not they have…
Last in a series. Read part one. For a long time, I used to dread going to physical therapy. It was painful and often counterproductive, and no one, as I described in my previous column, seemed to understand how to best handle my Ehlers-Danlos syndrome (EDS). But…
First in a series. After I was diagnosed with Ehlers-Danlos syndrome (EDS), one of the many things that became clear was why my previous attempts at physical therapy had failed when I was 16. Well, not just failed — they’d made everything worse. The therapists had understandably tried…
As someone with significant gastrointestinal problems due to having both Ehlers-Danlos syndrome (EDS) and alpha-gal syndrome, I find that Thanksgiving isn’t as straightforward for me as it is for most people. I can’t simply show up at someone’s house for a meal and dive right in. At…
“One day, when you’re my age, you’ll understand pain.” This might be one of the most frustrating and flippant comments I hear as someone in my mid-30s. Many who are older automatically assume that people my age don’t deal with any physical issues. Because my Ehlers-Danlos syndrome (EDS) is…
In a recent column, I described how my massage therapist and I realized that the cause of my back and foot pain was actually my hip. Thankfully, since that session, the pain has diminished. I had another session to work on it more, and I’m hopeful we’re moving in…
I’ve learned to pay attention so I can tell the symptoms of my Ehlers-Danlos syndrome (EDS) from other health issues. For about a week, I’d been feeling extra tired and sore, but that’s not necessarily unusual. Getting out of bed in the morning was particularly difficult, and I…
I’ve been dealing with a lot of muscle pain along the bottom of my ribs for the past couple of months. I don’t recall when or how it started, but once it was there, it seems like it just didn’t want to leave. Even regular bodywork, usually my ticket to…
Every time I think I’ve gotten a handle on the patterns of my Ehlers-Danlos syndrome (EDS), I’m pretty sure the universe laughs at me. Oh, you think you have it figured out? What about this? That’s pretty much what happened last week when I found myself surprised following a…
Recent Posts
- Global study reveals the complex web of health issues linked to hEDS February 5, 2026
- 73% of EDS patients second-guess pain, often after clinician skepticism: Study January 29, 2026
- My EDS pain seems to operate by different rules each day January 27, 2026
- New study urges platelet testing to manage bleeding risk in EDS January 22, 2026
- Another EDS flare is a real pain in the neck January 20, 2026
- Gut issues often drive hEDS patients to restrict their diets January 15, 2026
- 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