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…
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 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…
I try hard not to be negative or to complain too much. Overall, my Ehlers-Danlos syndrome (EDS) is not as bad as it could be, and I’ve found ways to manage most of my symptoms. I usually can do what I enjoy with a bit of creativity. Still, I…
As I wrote in last week’s column, I’m dealing with a pain flare. The pain, while better, is still not where it should be. The sensation is difficult to explain. The best way to describe it is numb — I can feel it, but the pain is beneath the…
Managing My Latest Pain Flare
For the past week or so, I’ve been dealing with a pain flare. As sometimes happens with me, I don’t really know what started it. I have old injuries that are easy to aggravate, and they become the points from which my pain tends to radiate.
One of the great things about working at a school is the time I get off. As someone with Ehlers-Danlos syndrome (EDS), chronic fatigue is my nemesis. I’m always tired. I usually aim to get eight or nine hours of sleep a night, but I still wake up tired.
Well, it’s officially 2020! It feels odd to say that. Then again, I’m pretty sure I said the same thing back in 2000 and 2010, so I digress. To wrap up 2019, I tried a new activity that I found both beneficial and enjoyable — yoga. My extended family traditionally…
I love the holiday season. Time spent with family, brisk winter air, time off from work (a bonus to working for a school), and giving gifts that make people smile — it’s hard to top that! I also try my best to make sure that my Ehlers-Danlos syndrome (EDS) affects…
As someone with Ehlers-Danlos syndrome (EDS), bruising is just a part of life. I rarely give my bruises more than a passing glance anymore. They’re just of a part of my natural complexion at this point. People who aren’t used to my bruising tend to be pretty shocked, and…
The past few weeks have gone by like a whirlwind. My horse, Cherry, and I had an awesome time at our last show of the season, most of the seniors I work with have finished their college applications, and I got together with two of my closest friends…
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