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, 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…
Walking through the kitchen at my mom’s house recently, I was too busy watching her new kitten, Phineas, play to pay attention to where I was going. I was also barefoot — something that’s rare for me since developing plantar fasciitis, as it’s usually too painful to walk without…
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…
Each morning after I wake up, I take stock of how I feel. Is my back stiff? Does it hurt? How about my shoulder? Did I sleep wrong and aggravate it? How about my plantar fasciitis? Does my hip feel stuck or out of place? While I do this…
Any morning I wake up and see a heat advisory on my phone’s weather app, I know I’m in for a fun day. Or more likely the opposite. Last week, I was smack in the middle of an East Coast heat wave, and the temperatures were miserable. A heat index…
I remember watching the ball fly past my last defender and realizing I had to choose: I could either run out from the goal, in hopes of beating the other team’s offensive player to the ball and clearing it away, or get ready for a one-on-one breakaway situation. As my…
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