Black and Blue Ribbons
— Karen Del Vecchio

invisible

An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. 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.

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My EDS pain seems to operate by different rules each day

One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can…

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Even in a Rainstorm I Seek Out the Positive

We’ve had a very strange “winter” so far here in the mid-Atlantic. I used quotation marks because we’ve barely had a winter. We’ve only had a few days of significant cold. Otherwise, it’s been bizarrely warm — and wet. My region has had so much rain recently that I’m…

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Remembering to Find the Positives in My Therapies

I try hard not to be negative or to complain too much. Overall, my Ehlers-Danlos syndrome (EDS) is not as bad as it could be, and I’ve found ways to manage most of my symptoms. I usually can do what I enjoy with a bit of creativity. Still, I…

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To Cope With Flares, I Mentally Block the Pain

As I wrote in last week’s column, I’m dealing with a pain flare. The pain, while better, is still not where it should be. The sensation is difficult to explain. The best way to describe it is numb — I can feel it, but the pain is beneath the…

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Managing My Latest Pain Flare

For the past week or so, I’ve been dealing with a pain flare. As sometimes happens with me, I don’t really know what started it. I have old injuries that are easy to aggravate, and they become the points from which my pain tends to radiate.

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Getting Back into the Swing of Things

One of the great things about working at a school is the time I get off. As someone with Ehlers-Danlos syndrome (EDS), chronic fatigue is my nemesis. I’m always tired. I usually aim to get eight or nine hours of sleep a night, but I still wake up tired.

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Stretching into the New Year with Restorative Yoga

Well, it’s officially 2020! It feels odd to say that. Then again, I’m pretty sure I said the same thing back in 2000 and 2010, so I digress. To wrap up 2019, I tried a new activity that I found both beneficial and enjoyable — yoga. My extended family traditionally…

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I Focus on the Holiday Spirit Instead of My EDS

I love the holiday season. Time spent with family, brisk winter air, time off from work (a bonus to working for a school), and giving gifts that make people smile — it’s hard to top that! I also try my best to make sure that my Ehlers-Danlos syndrome (EDS) affects…

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Deciphering the Types of Bruises My EDS Causes

As someone with Ehlers-Danlos syndrome (EDS), bruising is just a part of life. I rarely give my bruises more than a passing glance anymore. They’re just of a part of my natural complexion at this point. People who aren’t used to my bruising tend to be pretty shocked, and…

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I’m Grateful for the Continuous Benefits of Massage

The past few weeks have gone by like a whirlwind. My horse, Cherry, and I had an awesome time at our last show of the season, most of the seniors I work with have finished their college applications, and I got together with two of my closest friends…

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My Time in College Introduced Me to Horseback Riding

While in the mindset of slowing down and allowing myself time to recharge, I decided to take a short vacation. I rarely take time out because I always have so much going on. But I reached out to my two closest friends from college and asked if they wanted…

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Taking Time to Recharge

Summer and fall have been a nonstop whirlwind. A few weeks after graduation (I work as a college counselor at a private high school), the owner of the farm where I live had major knee surgery. That put me on farm duty for several months. My brother got married. And…

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Will Safety Vest Draw Attention to My EDS?

In the equestrian sport of eventing, we use a lot of gear. One piece of that puzzle is the safety gear we wear, particularly in the cross-country phase, where we jump solid obstacles in open fields or in the woods. Anytime a horse and rider are out on cross-country, riders…


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