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.Injuries, sprains, strains, and bruises are simply a part of life with Ehlers-Danlos syndrome (EDS). Sometimes I know what causes them, and other times I’m clueless. I’m not sure if it’s better to know or not. If I know, I can try to avoid those activities in the future,…
My hip hasn’t bothered me in a while. I guess that means it was about time for it to flare up and remind me that it’s there! That’s how it tends to go with me and my Ehlers-Danlos syndrome (EDS). Some ailments are constant, such as the ones in…
After my alarm went off on a recent morning, I rocketed out of bed when I realized I’d hit snooze so many times that it was more than 30 minutes past when I was supposed to be up. Racing to catch up and get out the door is never a…
I feel like I wear the same three pairs of shoes to work all the time. I don’t know if anyone else notices, but I do. Sometimes I feel self-conscious about it, but the shoes are comfortable. I’ve had issues with plantar fasciitis in the past, and I get blisters…
Some days my body sounds like Rice Krispies that have just had cold milk poured over them. Every time I move I snap, crackle, and pop! With my Ehlers-Danlos syndrome (EDS), there are times when I can’t move without making noise — though sometimes that’s from me groaning as…
I’ve written about how stubborn I am, and how I don’t let my Ehlers-Danlos syndrome (EDS) keep me from doing what I want. I don’t take no for an answer and tend to power through the situation, regardless of its impact on me. It’s a strategy I don’t recommend.
About a week and a half ago, I woke up in the middle of the night sleeping on my right side, which is always bad news. My right shoulder is badly damaged, and after spending over 20 years managing it, my body seems to know instinctively not to roll…
When I feel that sort-of-painful, sort-of-numb vibe in my right arm and shoulder, I know I’m in trouble. It’s not numb in the sense that I can’t feel it, but rather that I’m not processing the pain I know I’m experiencing. That’s when my damaged right shoulder has passed the…
Sometimes managing Ehlers-Danlos syndrome (EDS) feels like choosing the lesser of two evils. Should I do something that helps me in the long run, even if it causes issues in the short term? Currently, I’m having that debate regarding kinesiology tape for my tennis elbow. It helps with the…
I often think about how my Ehlers-Danlos syndrome (EDS) is affected by the weather. I also wonder whether the biggest factor in my EDS symptoms is the weather itself or how my activities change because of it. I’ve been experiencing wild temperature swings lately, ranging from 15 F to…
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