Black and Blue Ribbons
— Karen Del Vecchio

invisible

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.

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My EDS pain seems to operate by different rules each day

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…

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Ways I improve sleep quality and minimize fatigue with EDS

Last week seemed to drag on forever. Although I was finally feeling better after a rough patch, it got me thinking about how rest is a double-edged sword for me with Ehlers-Danlos syndrome (EDS). I definitely feel that I need more rest than most people, but I also…

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After a pain flare, I remind myself to be grateful for the good days

Last week when I finally caught up with my massage therapist, Kim, after a six-week break — I was sick, then she was — I told her she’d get to play a game called “Pick Your Train Wreck,” which had her laughing hysterically. Thanks to my Ehlers-Danlos syndrome (EDS),…

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A nasty rooster and COVID-19 made for a tough week with EDS

Two weeks ago, I wrote that I was struggling to get back into the swing of the school year. It’s always a tough transition, but this year, I was dragging more than usual at my job as a teacher and college counselor. But I didn’t dwell on it and…

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Considering how others perceive me and my invisible illness

Last week, an athletic trainer I was talking to asked why I had kinesiology tape on my leg. I told her I have plantar fasciitis and mentioned something about my Ehlers-Danlos syndrome (EDS). To my surprise, she said, “Wow, I didn’t know you had that. Actually, I…

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I’m anticipating the challenges when I return to school routines

After more than 10 years of working in schools, I should be better about managing my Ehlers-Danlos syndrome (EDS) through the transition from time off in the summer to the academic year in fall. But every year it seems to take me by surprise. Since I love my job,…

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Breaking down goals into smaller tasks helps in EDS management

As I drove out of the pit and started making my way around the first curve of the track, I was both nervous and excited. Much to my surprise, the head of the school where I work had decided on some unique back-to-school preparations. Instead of the usual team bonding…

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How I find stretches for shoulder pain beneficial

My shoulder is a common source of Ehlers-Danlos syndrome (EDS) pain. It hasn’t been the same since I had a terrible soccer injury as a teenager, before my diagnosis. Usually, my EDS pain affects the same muscles that my original injury directly affected: my trapezius…

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A near fall into a frog pond leads to a pain flare

It’d been a great day, and despite my Ehlers-Danlos syndrome (EDS), I wasn’t feeling particularly sore. My brother and niece were visiting, and we’d gone to a botanical garden with a kids area. It had a splash pad, sensory garden, and other age-appropriate ways for kids to interact with…


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