It’s been seven weeks since I badly broke my right ring finger. Last Monday, I went in for a follow-up appointment with my surgeon. My physical therapist and I have been working on straightening my finger, as it cannot currently straighten on its own. I can straighten it without…
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.
A recent social media post from a weather forecaster noted that the temperature, barometric pressure, and humidity would all fluctuate significantly in the coming days, and that the “aches and pains forecast” was high. These wild weather swings can affect people in a variety of ways, aggravating conditions such as…

Finding Our Common Ground
People in the rare disease community experience a variety of syndromes that vary in both severity and how they affect people. Some aspects of rare diseases are universal, while others are unique to each person. For me, a supportive community is key to managing symptoms with a positive attitude, which…
I’m exhausted. I feel like I say that a lot, but it’s true. I’m physically tired, both from going nonstop and from being sore due to falling off my horse Cherry. I’m emotionally tired because I’m fed up with the fact that something as small as a broken finger…
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…
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.
Recent Posts
- 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
- 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