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 realized earlier that I don’t often think of myself as having EDS. It’s not that I don’t recognize or accept that I have it, but that I rarely ever use it to frame how I’m feeling. For example, I experience a lot of EDS symptoms in my…
Wow, did summer sure decide to turn on its furnace overnight here in Virginia. A day ago, it was in the mid-70s and perfect, and today it was 92 F and humid. Let me tell you, I am not a heat or summer person despite having lived most of my…
Last week, I was able to see my massage therapist for the first time in over three months due to the pandemic. About 10 years ago, I learned that massage is an integral part of my pain management. I don’t think I’d gone more than three weeks or a…
One thing that’s both particularly difficult as well as sometimes wonderful about Ehlers-Danlos syndrome (EDS) is that, for the most part, it’s invisible. Except for my bruising, if you look at me, there’s nothing that would stand out and make someone realize that I have a rare genetic disorder.
Last week, I got some disappointing news. My horse Cherry somehow managed to fracture a bone in her foot. She was fine one day, and then the next she came in very lame after being in her field all night. Usually, the most common cause of such a sudden…
Ehlers-Danlos syndrome (EDS) is strange. Like many rare diseases, it’s unique to each person. For example, different types of injuries present variables in how a disease manifests. Since many of my long-term issues relate to specific injuries, I’ve learned to adapt to my body’s version of normal through various compensations.
Like many others, I’ve been forced to accept the current situation as our “new normal” for the foreseeable future. On most days, I get up, take care of the hounds and the cats, then hop online to work from home for a few hours. After lunch, I usually head to…
I’m pretty sure this is the longest I’ve gone without a massage since I learned that they’re critical to my pain management and well-being. Unfortunately, it doesn’t appear that I’ll be getting one anytime soon. While I’m thankful I’m still functional without massages, I can’t say I’m comfortable. When…
As I wrote in a recent column, one upside to all the extra time spent at home is that I’ve gotten to spend more time on activities I really enjoy but usually get squeezed out by the lack of time in my busy life. Two weeks ago, I discussed…
Here in Virginia, all nonessential businesses have been closed for several weeks. Frustratingly, I’m unable to access my two main therapies — massage and Pilates. Both of these activities are critical to my pain management, as massage helps to relax my tight muscles and Pilates remind my body…
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