Every day I’m incredibly thankful to be able to see a fantastic massage therapist on a regular basis. People often don’t understand how Ehlers-Danlos syndrome (EDS), which causes loose tendons and ligaments, leads to exceptionally tight muscles. Once I explain that it’s my body’s compensatory effort to try to make…
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.
One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can…

Another Round in the Finger Saga
A few weeks ago I was pretty happy to hear that because my finger injury was a break in the bone, my Eherls-Danlos syndrome (EDS) likely wouldn’t significantly impede my recovery. For the actual bone, that’s true. However, what we’ve since figured out in physical therapy is that I probably…
Some Days Are Just So 2020
I saw a cartoon the other day that showed a husband and wife sitting on a sofa. The wife asked her husband how his day was. He answered, “It was a total 2020.” His wife replied, “Say no more.” I had a “2020 day” last Sunday. No, I don’t…
Well, it’s been a rather eventful week since my last column. I was excited to have an appointment scheduled with a veterinarian last week for my horse Cherry to check on her healing from an injury, and to see if we could move to the next phase of rehab.
Life has continued to be a stressful whirlwind of teaching, college counseling, and just trying to manage the all-hands-on-deck reality of working in a school that’s back in session with kids on campus. It’s going about as well as anyone could’ve hoped, but…
Last weekend, I had a chance to go to my parents’ house for a while. They live only about 45 minutes away, but with everything I’ve had going on at work recently, I’ve been so busy I haven’t made it over there too often. I was hanging out and…
Like many people with Ehlers-Danlos syndrom, I often have gastrointestinal issues. I was diagnosed with a gut motility issue as a teenager, but I can really trace the problem back to when I was born. My parents have always joked about how I never let them sleep through the…
Well, the past week and a half has been a baptism by fire, to say the least. I currently have nowhere near enough hours in my day to handle everything that needs to be done, and then manage any form of self-care other than riding.
Well, it’s been quite a week. Just two days before school started at the high school where I work, I was asked to pick up a section of Honors U.S. History to teach in addition to my duties as a college counselor and an adviser to international students.
I’ve been back to work at a high school for just over two weeks, and it feels strange. Everyone is wearing masks, keeping far apart, and cleaning everything they touch. I’m lucky to have my own office, where I can close the door and remove my mask for a…
Last week, I returned to work for the first time since late March. It’s been an odd summer, to say the least. I also haven’t been able to get bodywork in months, an essential part of my self-care routine and critical to keeping my pain levels under control. Firstly,…
While the heat of summer unfortunately will continue for weeks to come, summer’s unofficial end is on the horizon as my date for going back to work approaches. As a college counselor in an independent high school, I’m usually off from mid-June to early August. Hence, in coming days, I’ll…
Recent Posts
- Global study reveals the complex web of health issues linked to hEDS February 5, 2026
- 73% of EDS patients second-guess pain, often after clinician skepticism: Study January 29, 2026
- My EDS pain seems to operate by different rules each day January 27, 2026
- New study urges platelet testing to manage bleeding risk in EDS January 22, 2026
- Another EDS flare is a real pain in the neck January 20, 2026
- Gut issues often drive hEDS patients to restrict their diets January 15, 2026
- I’ve been slowing down lately while continuing to recover from a fall January 13, 2026
- Compression garment use may reduce pain in hypermobile EDS, HSD: Study January 8, 2026
- I’m thankful for the lessons learned and progress made in 2025 December 23, 2025
- Walking saps more energy from hypermobile EDS, HSD patients: Study December 18, 2025