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.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…
Apparently, I’ve been compiling an unintended list of stupid things not to do when you have Ehlers-Danlos syndrome (EDS). First I fell out of a Kubota tractor while driving through a field. Then I was bitten on the arm by a grumpy mare who was having hoof pain…
Over the years, I’ve tried a variety of ways to make myself more comfortable at work, where I’m a teacher and college counselor. With my Ehlers-Danlos syndrome (EDS), too much time in any one position, whether sitting or standing, can cause discomfort. My workdays fluctuate between lots of time…
Last week, I was surprised when building a ramp for my dog didn’t cause my pain to flare up. This week, I’m shocked because I’m in the middle of a pain flare, and I don’t know why! That’s pretty much the epitome of Ehlers-Danlos syndrome (EDS). It comes…
Just when I think I know how my Ehlers-Danlos syndrome (EDS) will react in certain situations, I’m always surprised at what actually happens. My dog Pepper has recently been having trouble climbing stairs. She’s 13, and I’ve had her for two years. I knew that at some point she’d…
I vaguely heard a familiar jingle, which in my fuzzy state, confused me. Why was my alarm going off when it was still dark outside? I know I get up early to take care of the animals on my small farm before I go to work, but I don’t…
Do not fall out of a Kubota vehicle. You’re probably thinking, gee, that’s a pretty obvious statement. Yep, it sure is. And despite using four-wheel minitruck vehicles on farms for over a decade, I managed to take my first tumble off one recently. Despite only sliding a few…
The past few weeks have been a whirlwind. As a teacher, the end of winter always seems to drag, as cold, gray days and lots of sick kids make for a tough couple of months. I was pretty lucky this year, as I’d gotten only a mild cold back in…
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