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.Perhaps one of the toughest things about Ehlers-Danlos syndrome (EDS) is the chronic fatigue. It’s invisible, so those around you often don’t understand, and we live in a fast-paced world where there just aren’t enough hours in the day. I work full time as a college counselor at a…
As I’ve shared before, Pilates has been an enormous help in managing my Ehlers-Danlos syndrome (EDS). Although I was introduced to it as recently as December, I have noted improvements in my pain level after only a few sessions. The fact that I can actually do Pilates doesn’t make…
When you live on a farm, you are witness to many bizarre events. Animals are amazing and wonderful, but they have their moments and a baffling knack for getting into unusual situations. I have an apartment on a 17-acre horse farm that also has pigs, ducks, chickens, dogs, cats,…
I can manage to do most of what I want to, despite my Ehlers-Danlos syndrome. Sometimes, though, I have to get creative to pull it off. Because my joints are too loose, my muscles overcompensate by tightening up — that’s one of the reasons why massage is so helpful.
Overall, things have been going great in my life. My new horse Cherry is learning quickly, my other horse Spots is healing, and Pilates and massages generally keep me pretty well put together. Nevertheless, at times my body decides it just doesn’t feel like cooperating and rebels. As…
Back in November when I fell off my horse Spotty, I badly sprained my left medial collateral ligament and my right ankle. I could barely walk. Limping was entertaining because I didn’t have a “good” leg to limp on. Crutches wouldn’t have helped — with no good leg, there…
One common issue that many people with an Ehlers-Danlos syndrome (EDS) deal with is that we “look normal.” While I’m grateful that it’s not blatantly obvious to most people that I have EDS, there are times when it can make things awkward. That well-meaning person who says, “One day you’ll…
In the intervening weeks since my competition horse Spotty was diagnosed with a disorder affecting his legs, I realized that if I wanted to continue to improve my riding and be able to compete on occasion, I’d have to look for another horse. Now don’t worry, Spotty isn’t going anywhere;…
While you likely know by now that I have horses, you may not realize that I live on a small, private, horse-breeding farm. The owner is active duty in the military, so I have my own place on the farm that allows me to help whenever needed. For non-horse…
I’m not good at accepting my limitations. While I’ve gotten better about it over the years, I’m stubborn, and if EDS says I shouldn’t do something, my usual response is to find a way around it. I’m active, athletic, and love being outside. Anything that gets in the way…
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