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.
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…
I saw a cartoon the other day that showed a husband and wife sitting on a sofa. The wife asked her husband how his day was. He answered, “It was a total 2020.” His wife replied, “Say no more.” I had a “2020 day” last Sunday. No, I don’t…
Well, it’s been a rather eventful week since my last column. I was excited to have an appointment scheduled with a veterinarian last week for my horse Cherry to check on her healing from an injury, and to see if we could move to the next phase of rehab.
Life has continued to be a stressful whirlwind of teaching, college counseling, and just trying to manage the all-hands-on-deck reality of working in a school that’s back in session with kids on campus. It’s going about as well as anyone could’ve hoped, but…
Last weekend, I had a chance to go to my parents’ house for a while. They live only about 45 minutes away, but with everything I’ve had going on at work recently, I’ve been so busy I haven’t made it over there too often. I was hanging out and…
Like many people with Ehlers-Danlos syndrom, I often have gastrointestinal issues. I was diagnosed with a gut motility issue as a teenager, but I can really trace the problem back to when I was born. My parents have always joked about how I never let them sleep through the…
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