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 in a series. Read part one. For a long time, I used to dread going to physical therapy. It was painful and often counterproductive, and no one, as I described in my previous column, seemed to understand how to best handle my Ehlers-Danlos syndrome (EDS). But…
First in a series. After I was diagnosed with Ehlers-Danlos syndrome (EDS), one of the many things that became clear was why my previous attempts at physical therapy had failed when I was 16. Well, not just failed — they’d made everything worse. The therapists had understandably tried…
As someone with significant gastrointestinal problems due to having both Ehlers-Danlos syndrome (EDS) and alpha-gal syndrome, I find that Thanksgiving isn’t as straightforward for me as it is for most people. I can’t simply show up at someone’s house for a meal and dive right in. At…
“One day, when you’re my age, you’ll understand pain.” This might be one of the most frustrating and flippant comments I hear as someone in my mid-30s. Many who are older automatically assume that people my age don’t deal with any physical issues. Because my Ehlers-Danlos syndrome (EDS) is…
In a recent column, I described how my massage therapist and I realized that the cause of my back and foot pain was actually my hip. Thankfully, since that session, the pain has diminished. I had another session to work on it more, and I’m hopeful we’re moving in…
I’ve learned to pay attention so I can tell the symptoms of my Ehlers-Danlos syndrome (EDS) from other health issues. For about a week, I’d been feeling extra tired and sore, but that’s not necessarily unusual. Getting out of bed in the morning was particularly difficult, and I…
I’ve been dealing with a lot of muscle pain along the bottom of my ribs for the past couple of months. I don’t recall when or how it started, but once it was there, it seems like it just didn’t want to leave. Even regular bodywork, usually my ticket to…
Every time I think I’ve gotten a handle on the patterns of my Ehlers-Danlos syndrome (EDS), I’m pretty sure the universe laughs at me. Oh, you think you have it figured out? What about this? That’s pretty much what happened last week when I found myself surprised following a…
One thing I know for sure is that I have a much higher pain tolerance than most people. I guess that’s probably true for most people who manage chronic pain. They either learn to deal with it as best they can or they can’t function. What I didn’t consider…
The past few weeks have been a whirlwind. A couple of weeks ago, for instance, I went out of town for a funeral and then flew directly from there to a conference, where I spent a few days before returning home. The result from that travel? Exhaustion, a cold, and…
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