The rising and falling temperatures we’ve been experiencing lately have been challenging for me. With Ehlers-Danlos syndrome (EDS), I already tend to have tight muscles that cause pain. It’s a constant battle, regardless of what month of the year it is or whether it’s hot or cold outside.
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.
I’ve reached a plateau in my recovery from a badly broken rib and sprained diaphragm that’s been complicated by my Ehlers-Danlos syndrome (EDS), and I’ve been searching for what to do next. Recently, I went in for an evaluation with a physical therapist I’ve known for years, who…

I’ve been fighting plantar fasciitis on and off for over a year. While I’ve tried to do some things to manage it, mostly I’ve just ignored it. That’s one of my frequent go-to, but not-so-great, coping mechanisms for physical pain. As a result, my foot pain worsened…
I’m a creature of habit. I like my routines, and while I’m perfectly capable of altering them when I need to, I prefer rhythm and predictability in my day-to-day life. I moved a couple months ago, and while I still live in the same community with the same people (and…
When painful Ehlers-Danlos syndrome (EDS) symptoms get me down, I like to imagine that my body’s sore spots have their own personalities. No, I’m not crazy; I don’t actually believe they have their own feelings. But it’s entertaining to pretend they do. I find that joking about it is…
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…
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…
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