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.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…
The past couple weeks have been cold and stressful, so I needed a bit of a pick-me-up. I turned to a television show I hadn’t watched in a while called “The Wizard of Paws,” which follows orthotist Derrick Campana as he makes prosthetic limbs, braces, and carts for animals in…
It’s been really cold here in Virginia recently. I’m a New Englander at heart, so I really don’t mind the cold weather, but down here in the South, life isn’t set up for the kind of temperatures we’ve been having, and definitely not for snow. It’s been a struggle for…
There are times when life with Ehlers-Danlos syndrome feels like a revolving door of minor injuries and sprains. Of course, I have my chronic issues that cause problems, such as my right shoulder, right ankle, and right ring finger (apparently the right side of my body is cursed!), but then…
The last couple of weeks have been fun, but stressful. I love the holiday season, but that doesn’t mean that the business and stress of it all doesn’t get to me. I had a blast with my brother and his family, but since they live abroad, we try to…
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