Like many people with Ehlers-Danlos syndrome (EDS), I have numerous old injuries, including some I didn’t know about until after I was diagnosed. One of these involves scar tissue that’s developed along my spine. Recently, I’ve noticed that this area of my back seems to be more…
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…

A teenager I know was recently diagnosed with Ehlers-Danlos syndrome (EDS), and another is suspected of having it. After spending years not knowing anyone else with the condition, this was very surprising to me! Both the teenagers and their parents had a lot of questions about how I’ve managed…
As I recently scrolled through the news, a CNN article caught my eye. The headline was, “What you should know about sleep loss and inflammation, according to new study.” I was immediately intrigued, as just last week I wrote about my extreme fatigue, wondering if it played a…
The last couple weeks have been exhausting. I’m a teacher, and the beginning of school is always an adjustment as students get settled into their classes and I learn their personalities, strengths, and weaknesses. In addition to that, I’ve been taking care of an injured horse and doing a lot…
Historically, my pain-related issues and injuries have been more heavily located on my right side. My right ankle, hip, shoulder, and hand all have some sort of significant issue related to or made worse by Ehlers-Danlos syndrome (EDS). My right ankle is permanently damaged from me stubbornly continuing to…
I swear, every year that I’m a teacher, it seems like the school days go by faster. It’s hard to believe students have been back in school for more than three weeks! When I realized last week that I had the beginnings of plantar fasciitis — an inflammation in…
With the second week of school behind me, I’m starting to get back into the rhythm of my teaching routine. I recently noticed that, on some days, the bottom of my foot near my heel is sore. This has happened to me in the past, and it usually goes away…
After getting bodywork last week, my shoulder is thankfully improving after a recent pain flare. While I still don’t know what I did to aggravate it, I’m glad to be on the path to better comfort. I always have to be careful to take it slowly for a while…
Last week, I experienced some significant shoulder soreness. While that’s common in patients with Ehlers-Danlos syndrome, I also badly injured it when I was a teenager, and it hasn’t been quite right since. After my Ehlers-Danlos syndrome diagnosis at age 22, I finally had some tools…
As a college counselor and teacher at a local high school, I’m glad I return to work a week earlier than the rest of the staff after summer break. My first week back is still on summer hours, so we work Monday through Thursday. It’s quieter, so it’s a…
I’m not sure how it’s August already. I’m a teacher and feel like school just finished for the year, and now this week I head back! This summer has been odd, as my horse Cherry has been off due to injury, the heat has been intense, and I’ve been…
I recently was able to escape the Southern heat for a few days and visit my grandparents and extended family up in New England. My dad has six siblings, and each summer and Christmas, everyone does their best to gather from all over the world to spend time together.
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