I usually know when I’m crooked. When my body has been pulled out of alignment in a variety of ways, it’s usually pretty clear. But during my latest massage to treat the symptoms of my Ehlers-Danlos syndrome, something unusual happened. As I was lying on my…
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.
As I walked outside and felt the heat and humidity envelop me, I realized that summer has arrived early here in Virginia. Summer humidity is sweltering, and so far this year, we’ve been breaking both heat and drought records, which is a really tough combo when, like me, you have…

I’ve often said that chronic fatigue is the toughest part of having Ehlers-Danlos syndrome. It’s exhausting being tired all the time! As a high school teacher and post-graduate counselor, this time of year is especially draining, as it’s full speed ahead to the finish line of graduation.
I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other. Sometimes as I walk along, in fact, I can actually experience myself as twisted. When standing up straight recently, I felt that my right hip and…
As a teacher and postgraduate counselor, I’m used to going nonstop this time of year, but I still try to at least glance at a number of publications to stay on top of what’s happening in the world of education. Sometimes these news outlets highlight short excerpts about important research.
The past few weeks have been a roller coaster ride for me: I’ve been stressed at work and home and faced a pain flare to boot. But lately, things have been trending up. I’ve been thinking, however, that sometimes my pain flares feel different from each other. One…
Sometimes my Ehlers-Danlos syndrome (EDS) manifests in unexpected ways. While dealing with a pain flare and a lot of stress at work recently, I started to notice more pain in my right elbow. I was hoping it would decline as my flare subsided, and while it’s certainly better,…
After a tough couple of weeks, life is finally starting to settle back down for me. I’m less stressed, my bruises from a recent fall are healing, and I’m feeling better. It’s taken some time, but I’m on the upswing. During an Ehlers-Danlos syndrome (EDS) pain flare,…
As I landed face first in the cold mud, I was at least glad that the ground was soft and not frozen. While I marveled at the lack of awareness that led to me tripping and crashing, I was also thinking I had hit my threshold for crappy moments. I’ve…
Some weeks just don’t go how you hope they will. This past week was like that for me, and I can really feel it. Ehlers-Danlos syndrome (EDS) unfortunately means I have a strong physical-emotional connection. Being stressed often makes me stiff and sore, which in turn makes me…
Sometimes, when my back pain flares up, I know exactly what caused it. Other times, I have no idea. Last week fell into the “no clue” category. I knew that my back was sore, but it wasn’t until my massage therapist, Kim, really began working on it that I…
I’m back! I had a fantastic time at my recent work conference and learned so much from the colleagues I met there. Last week, I wrote that I was worried about dining options, as I have food sensitivities from Ehlers-Danlos syndrome as well as alpha-gal syndrome, a…
I’m preparing for a work conference, and for such events my dietary restrictions are a new element I have to consider carefully. Between the general food sensitivities that come with my Ehlers-Danlos syndrome (EDS) and being diagnosed with alpha-gal syndrome, a tick-borne disease that makes me allergic…
Recent Posts
- Psychiatric drugs don’t affect heart rhythms in hEDS, study finds June 25, 2026
- hEDS patients report less pain with long-term medical cannabis use June 18, 2026
- I’m trying to be patient with my healing process under an unusually hot sun June 16, 2026
- hEDS study points to pain, movement fears as quality-of-life hurdles June 11, 2026
- Eating challenges common among women with self-reported EDS June 4, 2026
- I know my EDS, so advocating for myself after my injury was the right call June 2, 2026
- Hormone blocker reduces ruptured blood vessel risk in VEDS mouse study May 28, 2026
- My latest EDS pain flare felt different — in the best way May 26, 2026
- Celiprolol may help lower risk of fatal vascular complications in vEDS May 21, 2026
- When it comes to EDS issues, there’s often no rhyme or reason May 19, 2026