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.
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…
While driving to work recently, I realized I was in one of my Ehlers-Danlos syndrome “twisted pretzel” phases. That’s what I call it when my body feels out of whack. I often notice it when I’m driving and realize that I’m not sitting evenly. This time I felt that…
A few weeks ago, I wrote about how I wound up with a massive bruise on my left arm, courtesy of a grumpy horse. As much as I dislike the huge bruises I get, I also find them interesting. But I didn’t realize until I read the comments on…
Sometimes I wonder what my life would be like if I didn’t have Ehlers-Danlos syndrome (EDS), specifically how it shaped my life choices before I knew I had it. Undoubtedly, my life would be radically different. Prior to my diagnosis at age 22, I was an avid soccer…
Even though I’m aware of my physical limitations, I’m often bad about respecting them when doing so would keep me from completing the task at hand. I’m probably a good Ehlers-Danlos syndrome (EDS) patient in the sense that I stay as active as possible. But on the flip…
Some weeks just feel eternal. It’s like you’re clawing your way along until Friday, desperate for a chance to get some rest and downtime to prepare for the next week. Sometimes, though, weekends aren’t a break and one week blends right into the next. That’s what happened to me recently…
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