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 love the holidays, especially Christmas. This year is certainly different in just about every way, except for one: If anything, I think we all need more holiday cheer to shine some light during this incredibly difficult time. This holiday, like Thanksgiving, will look nothing like normal. My…
Last week, I had another follow-up appointment for my finger. In late September, I had surgery to repair a badly broken right ring finger from a freak accident. It was a dislocated spiral fracture, and when the surgeon actually got in there during surgery, he found more bone fragments…
Being back to work at school after the holiday is both exciting and a little depressing. I mostly did farm work while I was off. One of the most refreshing things about doing farm work is that life feels normal for a few minutes when I’m outdoors doing chores and…
This year has hardly been traditional. Among the most obvious evidence of that has been COVID-19’s effect on schools. I’m a college counselor who helps high school juniors and seniors figure out their next step, and this year, I also had to suddenly become a history teacher. I’ve been…
The past few weeks have been a crazy whirlwind. I’m looking forward to Thanksgiving, even though it’s certainly going to be very different this year. With COVID-19 spiking, people struggling, and necessary social distancing, it can hardly feel like a year for thanks, but there are still things for…
It’s been seven weeks since I badly broke my right ring finger. Last Monday, I went in for a follow-up appointment with my surgeon. My physical therapist and I have been working on straightening my finger, as it cannot currently straighten on its own. I can straighten it without…
People in the rare disease community experience a variety of syndromes that vary in both severity and how they affect people. Some aspects of rare diseases are universal, while others are unique to each person. For me, a supportive community is key to managing symptoms with a positive attitude, which…
I’m exhausted. I feel like I say that a lot, but it’s true. I’m physically tired, both from going nonstop and from being sore due to falling off my horse Cherry. I’m emotionally tired because I’m fed up with the fact that something as small as a broken finger…
Every day I’m incredibly thankful to be able to see a fantastic massage therapist on a regular basis. People often don’t understand how Ehlers-Danlos syndrome (EDS), which causes loose tendons and ligaments, leads to exceptionally tight muscles. Once I explain that it’s my body’s compensatory effort to try to make…
A few weeks ago I was pretty happy to hear that because my finger injury was a break in the bone, my Eherls-Danlos syndrome (EDS) likely wouldn’t significantly impede my recovery. For the actual bone, that’s true. However, what we’ve since figured out in physical therapy is that I probably…
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