Some people like summer. Love it even. I’m not one of them. In fact, if I listed the four seasons for their weather attributes, summer would come in a very distant last. I live in the South, where it gets hot, humid, and sticky most of the time from June…
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.
Sometimes I feel like my Ehlers-Danlos syndrome (EDS) is just plain weird. I can’t always figure out what’s going on or why, which makes it harder to manage. Recently, I’ve been waking up with a stiff neck and back, and sometimes my muscles feel shaky, as if I haven’t…

One of the great things about horseback riding is that when done correctly, it requires an enormous amount of body awareness. While many people see a person riding and think the horse is doing all the work while the rider just sits there, it actually couldn’t be further from the…
I realized earlier that I don’t often think of myself as having EDS. It’s not that I don’t recognize or accept that I have it, but that I rarely ever use it to frame how I’m feeling. For example, I experience a lot of EDS symptoms in my…
Are Blisters Part of My EDS?
Wow, did summer sure decide to turn on its furnace overnight here in Virginia. A day ago, it was in the mid-70s and perfect, and today it was 92 F and humid. Let me tell you, I am not a heat or summer person despite having lived most of my…
Last week, I was able to see my massage therapist for the first time in over three months due to the pandemic. About 10 years ago, I learned that massage is an integral part of my pain management. I don’t think I’d gone more than three weeks or a…
One thing that’s both particularly difficult as well as sometimes wonderful about Ehlers-Danlos syndrome (EDS) is that, for the most part, it’s invisible. Except for my bruising, if you look at me, there’s nothing that would stand out and make someone realize that I have a rare genetic disorder.
Last week, I got some disappointing news. My horse Cherry somehow managed to fracture a bone in her foot. She was fine one day, and then the next she came in very lame after being in her field all night. Usually, the most common cause of such a sudden…
Ehlers-Danlos syndrome (EDS) is strange. Like many rare diseases, it’s unique to each person. For example, different types of injuries present variables in how a disease manifests. Since many of my long-term issues relate to specific injuries, I’ve learned to adapt to my body’s version of normal through various compensations.
I’m Trying to Make Lemon Pie
Like many others, I’ve been forced to accept the current situation as our “new normal” for the foreseeable future. On most days, I get up, take care of the hounds and the cats, then hop online to work from home for a few hours. After lunch, I usually head to…
I’m pretty sure this is the longest I’ve gone without a massage since I learned that they’re critical to my pain management and well-being. Unfortunately, it doesn’t appear that I’ll be getting one anytime soon. While I’m thankful I’m still functional without massages, I can’t say I’m comfortable. When…
Finding Positivity in Cooking
As I wrote in a recent column, one upside to all the extra time spent at home is that I’ve gotten to spend more time on activities I really enjoy but usually get squeezed out by the lack of time in my busy life. Two weeks ago, I discussed…
Here in Virginia, all nonessential businesses have been closed for several weeks. Frustratingly, I’m unable to access my two main therapies — massage and Pilates. Both of these activities are critical to my pain management, as massage helps to relax my tight muscles and Pilates remind my body…
Recent Posts
- Severe pain linked to more cannabis, cigarette use in Ehlers-Danlos patients 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
- High pressure in skull may be rare sign of Ehlers-Danlos October 30, 2025