I’m preparing for a work conference, and for such events my dietary restrictions are a new element I have to consider carefully. Between the general food sensitivities that come with my Ehlers-Danlos syndrome (EDS) and being diagnosed with alpha-gal syndrome, a tick-borne disease that makes me allergic…
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…

It’s the season for dry skin. Between the cold weather and frequent hand-washing, I can’t seem to stay ahead of it. I have a variety of heavy-duty lotions, but sometimes my skin still gets too dry. The worst part about that is the itching. I know, you’re not supposed to…
Back during that crazy cold snap in December, I remembered how amazing heating pads can be. Where I live, houses aren’t built with subzero wind chills in mind. So let’s just say that it got rather nippy inside when the wind chill outdoors hit somewhere around -7 F. I learned…
I don’t sit still well. I’m not sure I would’ve survived elementary school if I hadn’t been in a Montessori-style school that allowed me to move around at will, do my math while lying on the floor, and explore new things. I can sit and focus without trouble when I…
I love dogs — I have two rescue dogs — but some days they sure give me a run for my money. I was recently watching a friend’s dogs while she was out of town. My friend lives on a farm, like I do, but her farm is bigger…
A few days ago, I stumbled upon a recent blog post titled “Come As You Are: The Autoimmune Equestrian” on the website Eventing Nation. Eventing, or the triathlon of horse sports, as it’s often called, has a range of levels, from Olympic all the way down to…
I hope everyone had a restful holiday and New Year’s, however you choose to celebrate! Mine didn’t turn out as I had planned. My Ehlers-Danlos syndrome (EDS) threw in some challenges, but thankfully, a little ingenuity managed to help me figure out a workaround. Like most of the country,…
I’ve always loved the holiday season. Even though I can’t embrace it with abandon, as I did as a small child, I still revel in the feelings of Christmas. To me, the holiday season is truly about giving to others. This time of year, people are often gentler to…
After setting off a pain flare with a brief shoulder subluxation, or partial dislocation, a few weeks ago, I’ve thankfully been able to get things under control. Babying it a little bit and getting bodywork from my amazing massage therapist, Kim, brought the pain back to a manageable…
As soon as I felt my shoulder click, I knew I was in trouble. Overall, my body had been doing relatively well recently, without any pain flares. But that subtle feeling in my shoulder let me know the streak was about to come to an end. While I often…
As a teacher, I’m incredibly lucky to have extra time off work around Thanksgiving. It gives me a few days to recharge from the constant chronic fatigue of Ehlers-Danlos syndrome (EDS) before the holiday season kicks into high gear. Since I typically head to my parents’ house, about 45…
Wow, I continue to be overwhelmed by everyone’s responses to my previous two columns about food sensitivities! I had no idea that what I knew was an issue for those of us with Ehlers-Danlos syndrome (EDS) was so prevalent. While these sensitivities can be frustrating at times,…
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