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,…
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…

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…
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,…
Recent Posts
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- 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