An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. 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.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…
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),…
The other week, I felt a twinge in my back when I woke up, but I hoped I’d just slept funny and it would soon go away. As the day went on, though, the slight discomfort grew until my back became quite painful. Getting up from a chair was awkward,…
After a rough couple of weeks, the past few days have been an exercise in remembering to listen to my body and take the time I need to heal, as I’ve been recovering from what was likely a case of COVID-19 and a nasty fall caused by the…
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…
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…
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,…
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…
As I stress on the phone about how I have no idea what my schedule looks like for the next day and I don’t know what I’m going to do, my mom calmly cuts in and says, “Go take a nap. If it’s still a problem when you wake…
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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