I often think about how my Ehlers-Danlos syndrome (EDS) is affected by the weather. I also wonder whether the biggest factor in my EDS symptoms is the weather itself or how my activities change because of it. I’ve been experiencing wild temperature swings lately, ranging from 15 F to…
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.
Dear readers, After seven years and over 300 columns, it’s time for me to say goodbye. Through this column, I’ve gotten to connect with other amazing people with Ehlers-Danlos syndrome (EDS), and I’m certain I’ve learned more from you all than you have from me. Your comments validating my…

The past couple weeks have been cold and stressful, so I needed a bit of a pick-me-up. I turned to a television show I hadn’t watched in a while called “The Wizard of Paws,” which follows orthotist Derrick Campana as he makes prosthetic limbs, braces, and carts for animals in…
It’s been really cold here in Virginia recently. I’m a New Englander at heart, so I really don’t mind the cold weather, but down here in the South, life isn’t set up for the kind of temperatures we’ve been having, and definitely not for snow. It’s been a struggle for…
There are times when life with Ehlers-Danlos syndrome feels like a revolving door of minor injuries and sprains. Of course, I have my chronic issues that cause problems, such as my right shoulder, right ankle, and right ring finger (apparently the right side of my body is cursed!), but then…
The last couple of weeks have been fun, but stressful. I love the holiday season, but that doesn’t mean that the business and stress of it all doesn’t get to me. I had a blast with my brother and his family, but since they live abroad, we try to…
Recently, a reader asked me about Ehlers-Danlos syndrome (EDS) support groups and other organizations, and various ways of handling daily life with EDS. That got me thinking about my own support networks and how they’ve changed over the years. It also made me wonder how others with EDS approach…
Sometimes the soreness I experience in my body seems to come out of nowhere. I’ll be fine one day and then bam, I’ll wake up the next morning feeling superstiff and awkward for no apparent reason. The other night, I went to bed tired after a long and busy day,…
I can’t believe there’s only a couple of weeks until Christmas. It feels like this year has flown by! Every year on the weekend before Thanksgiving, I spend time with my two best friends from college. They’re the kind of friends you can go weeks or months without talking to,…
With Christmas rapidly approaching, I’m excited about the holidays — partly because I’ll feel more confident in what I eat this year. Between my alpha-gal syndrome and Ehlers-Danlos syndrome (EDS) food sensitivities, I sometimes have to struggle to enjoy holiday gatherings where food is served. But I’ve…
This week’s message is simple: Don’t get walking pneumonia from your students (or anyone else). A little while ago, I felt like I was coming down with a cold. I didn’t feel too bad, just a little tired and congested. I figured I’d be fine in a few days. I…
I’ve been thinking lately how awareness of Ehlers-Danlos syndrome (EDS) has changed over the years. Growing up, I’d never heard of it. The first time I did was as an adult, when a doctor at Georgetown University, where I’d been sent to search for a diagnosis, told me he…
It’s the time of year when illness starts whipping through the school halls like wildfire. Recently, we’ve had students out with seemingly everything you can think of, including flu, bronchitis, pneumonia, standard colds, and stomach bugs. As a teacher, I’m pretty well immune to most bugs after more than a…
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