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.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…
Summer means I have a break from teaching, which is great for rejuvenating myself for the next school year. But it’s also easy for me to do too much because I have more free time. That must mean I can do more, right? Wrong. To avoid taking on too much…
Over the years, I’ve found a few things that help me manage Ehlers-Danlos syndrome (EDS). Readers of this column likely know that one important thing is getting massages. It’s really the only thing that seems to help with the pain and with keeping my muscles from locking…
Sometimes the pain from Ehlers-Danlos syndrome (EDS) is just weird. I don’t have a better way to describe it. A specific area may hurt when I’m in a pain flare, but it mostly feels like a vague “pain bubble” that I’m sort of immersed in. But occasionally, I’ll have…
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