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.After setting off a pain flare with a brief shoulder subluxation, or partial dislocation, a few weeks ago, I’ve thankfully been able to get things under control. Babying it a little bit and getting bodywork from my amazing massage therapist, Kim, brought the pain back to a manageable…
As soon as I felt my shoulder click, I knew I was in trouble. Overall, my body had been doing relatively well recently, without any pain flares. But that subtle feeling in my shoulder let me know the streak was about to come to an end. While I often…
As a teacher, I’m incredibly lucky to have extra time off work around Thanksgiving. It gives me a few days to recharge from the constant chronic fatigue of Ehlers-Danlos syndrome (EDS) before the holiday season kicks into high gear. Since I typically head to my parents’ house, about 45…
Wow, I continue to be overwhelmed by everyone’s responses to my previous two columns about food sensitivities! I had no idea that what I knew was an issue for those of us with Ehlers-Danlos syndrome (EDS) was so prevalent. While these sensitivities can be frustrating at times,…
As I wrote in my last column, I’ve learned that I can’t eat any mammalian products, as they make me quite sick. I’ve never been a big meat eater, so giving up steak and whatnot really wasn’t hard for me. I’ve since found, however, that many meat and dairy…
Wow! I was completely surprised by the overwhelming response to my recent column about my dairy intolerance. While I’ve known for a while that gastrointestinal (GI) upset is an issue for many of us with Ehlers-Danlos syndrome (EDS), I had no idea how many of us dealt with…
If I had to pick a place on my body that would cause me issues with my Ehlers-Danlos syndrome (EDS), it’d basically be anywhere on my right side. I’ve injured my right shoulder, ankle, knee, hip, and hand. Thankfully, my left side hasn’t been nearly as battered…
After some thinking, I realized that there may have been a reason behind the seemingly random inflammation and pain flare I wrote about last week. Many people with Ehlers-Danlos syndrome (EDS) struggle with stomach and gastrointestinal issues, including me, unfortunately. Looking back, I think a mistake…
Like many people with Ehlers-Danlos syndrome (EDS), I have numerous old injuries, including some I didn’t know about until after I was diagnosed. One of these involves scar tissue that’s developed along my spine. Recently, I’ve noticed that this area of my back seems to be more…
A teenager I know was recently diagnosed with Ehlers-Danlos syndrome (EDS), and another is suspected of having it. After spending years not knowing anyone else with the condition, this was very surprising to me! Both the teenagers and their parents had a lot of questions about how I’ve managed…
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