Wow! I was completely surprised by the overwhelming response to my recent column about my dairy intolerance. While I’ve known for a while that gastrointestinal (GI) upset is an issue for many of us with Ehlers-Danlos syndrome (EDS), I had no idea how many of us dealt with…
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…

If I had to pick a place on my body that would cause me issues with my Ehlers-Danlos syndrome (EDS), it’d basically be anywhere on my right side. I’ve injured my right shoulder, ankle, knee, hip, and hand. Thankfully, my left side hasn’t been nearly as battered…
After some thinking, I realized that there may have been a reason behind the seemingly random inflammation and pain flare I wrote about last week. Many people with Ehlers-Danlos syndrome (EDS) struggle with stomach and gastrointestinal issues, including me, unfortunately. Looking back, I think a mistake…
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…
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…
Recent Posts
- Psychiatric drugs don’t affect heart rhythms in hEDS, study finds June 25, 2026
- 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