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’m baffled by my body’s connections and the way it compensates for issues related to my Ehlers-Danlos syndrome. Recently, I’ve been experiencing a sharp pain in the muscles along the front and sides of the bottom of my rib cage. I couldn’t think of anything I’d done…
I’ve recently been tapping into a new level of body awareness — or at least trying to. I’ve previously written about my pain flares and how my proprioception — the sense of body positioning in space — has been off at times. While these unfortunately are common…
I recently wrote about a strange sensation of energy I experienced during a massage, and it’s been really neat hearing feedback from others with Ehlers-Danlos syndrome (EDS) who’ve had similar experiences. One reader, a Chinese medicine practitioner, commented and said that it did indeed sound like I’d released some…
“When you’re not used to hurting all the time anymore, it really sucks when you do, doesn’t it?” Those are the paraphrased words of my massage therapist last week, and while they perhaps weren’t the most elegantly phrased, they sure rang true to me. After having a bizarre Ehlers-Danlos…
I’ve been managing some unusual pain issues over the past few weeks. It’s rare that I don’t feel better after a massage, but two weeks ago, that happened. Even after a few days, my pain wasn’t improving. It felt like I hadn’t even had a massage. I couldn’t…
I’ve been managing some funky, twisted body things recently. One of those has been manifesting in my back, and it feels bizarre. About a third to halfway down my spine, there’s an area that has a lot of scar tissue and muscle damage, and it feels like concentric circles…
I usually know when I’m crooked. When my body has been pulled out of alignment in a variety of ways, it’s usually pretty clear. But during my latest massage to treat the symptoms of my Ehlers-Danlos syndrome, something unusual happened. As I was lying on my…
I’ve often said that chronic fatigue is the toughest part of having Ehlers-Danlos syndrome. It’s exhausting being tired all the time! As a high school teacher and post-graduate counselor, this time of year is especially draining, as it’s full speed ahead to the finish line of graduation.
I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other. Sometimes as I walk along, in fact, I can actually experience myself as twisted. When standing up straight recently, I felt that my right hip and…
As a teacher and postgraduate counselor, I’m used to going nonstop this time of year, but I still try to at least glance at a number of publications to stay on top of what’s happening in the world of education. Sometimes these news outlets highlight short excerpts about important research.
Get regular updates to your inbox.