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 sit here working on my column, with a heating pad wrapped around my hip to calm down a recent injury, I wonder about the similarities among those of us with various rare disorders. Of course, someone like me…
As I often do, I had an interesting discussion with my rock-star massage therapist Kim last week. She’d been on vacation for a few weeks, so I’d missed a session and was feeling quite sore. My hip, which I injured a few months ago, recently decided to get…
Well, it’s official. The COVID-19 school year is officially complete! For students, at least. As faculty, we still have a few weeks left, but I still can’t believe it’s over already. This year has felt both like it’s lasted an eternity and gone by in a flash. There have been…
Shoes and I have an interesting relationship. I’ve said before that I seem to be much more susceptible to blisters, but my flat feet are a different issue. Like many people with Ehlers-Danlos syndrome (EDS), I’ve always had flat feet. That was one of the many things doctors…
Although sleeping helps me feel my best, it is also my greatest adversary. Like many people with Ehlers-Danlos syndrome, chronic exhaustion is a constant battle. No matter how much sleep I get, I’m always tired. Add the fact that it’s crunch time at the end of a school year,…
Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.
Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…
The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy…
I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…
After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really needed it, as I’ve been dealing with a pain flare from getting stuck in the mud at the farm where I live. Most of…
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