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 don’t think I’m alone in hoping that 2021 would be a better year than last, but it’s certainly off to an interesting start. I work as a college counselor and history teacher at a high school, and my students are currently taking classes online. Although we managed to have…
I’m certain I don’t have to tell anyone reading this column that having Ehlers-Danlos syndrome (EDS) means overcoming a lot of hurdles and other negative things. These include chronic pain, fatigue, ease of injury, gastrointestinal issues, anxiety and other mental health concerns — and those are just the start…
As is common for someone with Ehlers-Danlos syndrome (EDS), I’ve done plenty of physical therapy (PT). After my diagnosis at 22, I was referred to PT to work on many long-standing problems that had never been resolved because we weren’t viewing things in the context of EDS. These issues…
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…
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