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.I was able to take a few days recently to visit my extended family. It’s always nice to see my aunts, uncles, cousins, and grandparents, and while we don’t typically plan any big outings, we always enjoy spending low-key time together. Many of us have food allergies or other…
Note: This column describes the author’s own experiences with anti-inflammatories. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For someone who daily manages chronic pain, courtesy of Ehlers-Danlos syndrome (EDS), I’m surprisingly bad at it. Sometimes I don’t manage…
I’ve mentioned before that I’ve never met anyone else with Ehlers-Danlos syndrome (EDS) in person. That’s one of the reasons I’ve enjoyed writing this column: It’s allowed me to connect with others managing similar health issues. Recently, however, I met someone else with EDS! My brother and his family…
After reading my column last week about a grueling high school soccer match that ended with me collapsing in exhaustion, unable to breathe, someone asked if my coaches had pushed me too hard. The answer is no. Actually, if there was something to blame for my teenage decision to…
I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe. I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the…
Last week’s column about my hip pain got me thinking. I badly injured my right hip when I was 16 or 17 years old, before my diagnosis of Ehlers-Danlos syndrome (EDS). I’m not sure if I had hip pain prior to that, but I’ve had issues with it…
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…
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