This school year has been unique, to say the least. As a high school teacher and college counselor, I’ve been lucky to work at an institution that has made an effort to allow everyone to continue attending in person. We have numerous and extensive measures in place that have…
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.
Walking through the door for my first Pilates session in nearly six years, I felt a wave of nerves. The last six months had been a difficult recovery from a severely broken rib and a sprained diaphragm, injuries further complicated by Ehlers-Danlos syndrome (EDS). I was anxious that engaging…

Is it spring yet? Like for many people in the U.S., the weather in Virginia has been less than stellar lately. We’ve had record-breaking rainfall, and while I’m thankful we’ve been spared the ice storms and frigid conditions of other states, it’s still pretty miserable here. The last two weeks,…
Over the years, the position in which I’m most comfortable sleeping at night has changed. For most of my life, I could only sleep on my stomach. After I was diagnosed and my pain level became more manageable, I slept primarily on my back. Recently, for whatever reason, I seem…
I’m so lucky to be able to have massage therapy every other week. While I wasn’t diagnosed with Ehlers-Danlos syndrome (EDS) until I was 22 and didn’t start regular massages until several years after that, I’ve since learned that they are critical to my well-being and pain…
I really need to stop doing stupid things and hurting myself. Sheesh. Last September, I badly broke my finger and had to have surgery. I now sport a plate and six screws in my right ring finger. Then, just a…
After two weeks of virtual learning to avoid the post-holiday spike in COVID-19 cases, students in the school where I work returned to in-person learning last week. I was nervous about it at first, as I’d gotten used to my little bubble at home and on the farm over the…
I don’t think I’m alone in hoping that 2021 would be a better year than last, but it’s certainly off to an interesting start. I work as a college counselor and history teacher at a high school, and my students are currently taking classes online. Although we managed to have…
I’m certain I don’t have to tell anyone reading this column that having Ehlers-Danlos syndrome (EDS) means overcoming a lot of hurdles and other negative things. These include chronic pain, fatigue, ease of injury, gastrointestinal issues, anxiety and other mental health concerns — and those are just the start…
As is common for someone with Ehlers-Danlos syndrome (EDS), I’ve done plenty of physical therapy (PT). After my diagnosis at 22, I was referred to PT to work on many long-standing problems that had never been resolved because we weren’t viewing things in the context of EDS. These issues…
I love the holidays, especially Christmas. This year is certainly different in just about every way, except for one: If anything, I think we all need more holiday cheer to shine some light during this incredibly difficult time. This holiday, like Thanksgiving, will look nothing like normal. My…
Last week, I had another follow-up appointment for my finger. In late September, I had surgery to repair a badly broken right ring finger from a freak accident. It was a dislocated spiral fracture, and when the surgeon actually got in there during surgery, he found more bone fragments…
Being back to work at school after the holiday is both exciting and a little depressing. I mostly did farm work while I was off. One of the most refreshing things about doing farm work is that life feels normal for a few minutes when I’m outdoors doing chores and…
Recent Posts
- Heavy menstrual bleeding affects 9 in 10 women with EDS: Study March 19, 2026
- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026
- New study finds autism tied to worse health outcomes in hEDS, HSD March 12, 2026
- New study finds higher vascular complication risk in males with vEDS March 5, 2026
- Zeroing in on ‘fight or flight’ as the reason for my slow recovery from injury March 3, 2026
- Loneliness strongly linked to worse physical and mental health in hEDS February 26, 2026
- The ‘aches and pains forecast’ that validated my EDS symptoms February 24, 2026
- HSD, hEDS tied to diagnostic delays, poor quality of life in aging women February 19, 2026
- I’m trying different types of physical therapy to keep making progress February 19, 2026
- Genetic changes across 3 biological systems may drive hypermobile EDS February 12, 2026