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…
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.
Note: This column describes the author’s experiences with fascial counterstrain therapy (FCS). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It’s still hard to believe how much I’ve benefited from adding fascial counterstrain therapy (FCS) to my self-care routine.

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…
Like everyone right now, my life and my therapies have been upended by the coronavirus. While it’s easy to get bogged down in all the stress and seemingly all-consuming fear (especially if you turn on the television), the forced downtime has some positives if we remember to look for…
In this time of uncertainty, stress and anxiety (a very common co-diagnosis with Ehlers-Danlos syndrome) management are critical to my self-care. Like virtually everyone else, my life has been a bit upended recently. But I’m trying to make the best of it that I can, while at the same…
It’s hard to believe that only a week has passed since I wrote my last column. Everything is so different that it feels like months ago, not days. In the interim, COVID-19 has turned everyone’s world here in the U.S.
One of the many unusual issues that come with having Ehlers-Danlos syndrome is the way that I can injure myself and not even know how I did it. That sounds baffling to most people, but for those with EDS, it’s not uncommon to find you have bruises you weren’t…
As I’ve mentioned in previous columns my shoulder is probably the most damaged joint in my body. When I was about 15, I dislocated it, broke my collarbone, tore my trapezius muscle, and…
I love snow. It doesn’t snow very often where I live, but I sure enjoy when it does. We got about 5 inches of snow last Thursday. I work as a college counselor at a private high school, so I benefited from the decision to close school on Friday. A…
Presidents Day is a nice three-day weekend to have in the middle of winter and a good time to recharge. As much as I hate to admit it, the chronic fatigue from Ehlers-Danlos syndrome (EDS) wears me down. The breaks I get working…
We’ve had a very strange “winter” so far here in the mid-Atlantic. I used quotation marks because we’ve barely had a winter. We’ve only had a few days of significant cold. Otherwise, it’s been bizarrely warm — and wet. My region has had so much rain recently that I’m…
Recent Posts
- Dismissive doctors cause EDS patients to minimize their own pain May 7, 2026
- The benefits of fascial counterstrain therapy just keep accumulating May 5, 2026
- Guest Voice: With EDS, I accept what’s challenging, embrace what’s possible May 4, 2026
- Nonprofit’s 2026 EDS Awareness Month goal: Net $100K for research, care April 30, 2026
- Long stretches of driving trigger an EDS pain flare-up April 28, 2026
- Dentists may spot EDS signs during routine exams, study finds April 23, 2026
- Attention, cognitive issues tied to pain, body regulation problems in hEDS April 16, 2026
- Why I am no longer thinking of myself as ‘a mess’ due to EDS April 14, 2026
- New study suggests hypermobile EDS and HSD may share a disease spectrum April 9, 2026
- Overcoming my fear of pain to get back on the horse — literally April 7, 2026