Shoes and I have an interesting relationship. I’ve said before that I seem to be much more susceptible to blisters, but my flat feet are a different issue. Like many people with Ehlers-Danlos syndrome (EDS), I’ve always had flat feet. That was one of the many things doctors…
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.
I’ve reached a plateau in my recovery from a badly broken rib and sprained diaphragm that’s been complicated by my Ehlers-Danlos syndrome (EDS), and I’ve been searching for what to do next. Recently, I went in for an evaluation with a physical therapist I’ve known for years, who…

Although sleeping helps me feel my best, it is also my greatest adversary. Like many people with Ehlers-Danlos syndrome, chronic exhaustion is a constant battle. No matter how much sleep I get, I’m always tired. Add the fact that it’s crunch time at the end of a school year,…
Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.
Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…
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…
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…
Recent Posts
- 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
- Are fatigue, pain, and soreness an EDS flare-up or a winter illness? February 10, 2026
- Global study reveals the complex web of health issues linked to hEDS February 5, 2026