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.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…
Like everyone right now, my life and my therapies have been upended by the coronavirus. While it’s easy to get bogged down in all the stress and seemingly all-consuming fear (especially if you turn on the television), the forced downtime has some positives if we remember to look for…
In this time of uncertainty, stress and anxiety (a very common co-diagnosis with Ehlers-Danlos syndrome) management are critical to my self-care. Like virtually everyone else, my life has been a bit upended recently. But I’m trying to make the best of it that I can, while at the same…
It’s hard to believe that only a week has passed since I wrote my last column. Everything is so different that it feels like months ago, not days. In the interim, COVID-19 has turned everyone’s world here in the U.S.
One of the many unusual issues that come with having Ehlers-Danlos syndrome is the way that I can injure myself and not even know how I did it. That sounds baffling to most people, but for those with EDS, it’s not uncommon to find you have bruises you weren’t…
As I’ve mentioned in previous columns my shoulder is probably the most damaged joint in my body. When I was about 15, I dislocated it, broke my collarbone, tore my trapezius muscle, and…
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