I was able to take a few days recently to visit my extended family. It’s always nice to see my aunts, uncles, cousins, and grandparents, and while we don’t typically plan any big outings, we always enjoy spending low-key time together. Many of us have food allergies or other…
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…

Note: This column describes the author’s own experiences with anti-inflammatories. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For someone who daily manages chronic pain, courtesy of Ehlers-Danlos syndrome (EDS), I’m surprisingly bad at it. Sometimes I don’t manage…
I’ve mentioned before that I’ve never met anyone else with Ehlers-Danlos syndrome (EDS) in person. That’s one of the reasons I’ve enjoyed writing this column: It’s allowed me to connect with others managing similar health issues. Recently, however, I met someone else with EDS! My brother and his family…
After reading my column last week about a grueling high school soccer match that ended with me collapsing in exhaustion, unable to breathe, someone asked if my coaches had pushed me too hard. The answer is no. Actually, if there was something to blame for my teenage decision to…
I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe. I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the…
Last week’s column about my hip pain got me thinking. I badly injured my right hip when I was 16 or 17 years old, before my diagnosis of Ehlers-Danlos syndrome (EDS). I’m not sure if I had hip pain prior to that, but I’ve had issues with it…
Sometimes I’m baffled by my body’s connections and the way it compensates for issues related to my Ehlers-Danlos syndrome. Recently, I’ve been experiencing a sharp pain in the muscles along the front and sides of the bottom of my rib cage. I couldn’t think of anything I’d done…
I’ve recently been tapping into a new level of body awareness — or at least trying to. I’ve previously written about my pain flares and how my proprioception — the sense of body positioning in space — has been off at times. While these unfortunately are common…
I recently wrote about a strange sensation of energy I experienced during a massage, and it’s been really neat hearing feedback from others with Ehlers-Danlos syndrome (EDS) who’ve had similar experiences. One reader, a Chinese medicine practitioner, commented and said that it did indeed sound like I’d released some…
“When you’re not used to hurting all the time anymore, it really sucks when you do, doesn’t it?” Those are the paraphrased words of my massage therapist last week, and while they perhaps weren’t the most elegantly phrased, they sure rang true to me. After having a bizarre Ehlers-Danlos…
I’ve been managing some unusual pain issues over the past few weeks. It’s rare that I don’t feel better after a massage, but two weeks ago, that happened. Even after a few days, my pain wasn’t improving. It felt like I hadn’t even had a massage. I couldn’t…
I’ve been managing some funky, twisted body things recently. One of those has been manifesting in my back, and it feels bizarre. About a third to halfway down my spine, there’s an area that has a lot of scar tissue and muscle damage, and it feels like concentric circles…
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