The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy…
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…

I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…
After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really needed it, as I’ve been dealing with a pain flare from getting stuck in the mud at the farm where I live. Most of…
I haven’t been sleeping restfully this week. I’ve been doing that whole wake-up-and-roll-back-over thing seemingly a dozen times a night. I’ve been dealing with a pain flare since I got stuck in some thick, deep mud in a pasture at the farm where I live and nearly pulled my…
Last week, I went to the dentist for the first time since the beginning of the pandemic. I had my regular cleaning just before everything shut down last year, and then dentists were either closed or working at reduced capacity for months. After my fall appointment was canceled, I joined…
Throughout the past week, the weather has been gorgeous. After weeks of seemingly endless rain, terrible mud that’s taken a real toll on me physically, and generally depressing weather, it’s been a true mood-lifter to see the sun and milder temperatures. I love many things about winter, such as soups…
This week has been busy. After all the rain we’ve had in the mid-Atlantic region recently, the ground is soaking wet, but we’ve finally had a few days in a row without rain, and the sun has been shining. It’s been amazing! I’ve tried…
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…
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…
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