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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Trying to understand and manage changing trends in my health

Sometimes I feel like my Ehlers-Danlos syndrome (EDS) is just plain weird. I can’t always figure out what’s going on or why, which makes it harder to manage. Recently, I’ve been waking up with a stiff neck and back, and sometimes my muscles feel shaky, as if I haven’t…

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Farm Chores Are a Unique Form of Therapy

While you likely know by now that I have horses, you may not realize that I live on a small, private, horse-breeding farm. The owner is active duty in the military, so I have my own place on the farm that allows me to help whenever needed. For non-horse…

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I’m Learning to Accept I Can’t Do All I Once Could

I’m not good at accepting my limitations. While I’ve gotten better about it over the years, I’m stubborn, and if EDS says I shouldn’t do something, my usual response is to find a way around it. I’m active, athletic, and love being outside. Anything that gets in the way…

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Pilates Has Worked Wonders for My EDS Challenges

Back in December I started Pilates. Wow. Seriously, I love it. I never imagined that I’d enjoy working out in the traditional sense, but this is different. In November I took a fall off my horse Spotty (before his injury), badly spraining my right ankle and my left MCL.

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My Continual Work Toward Managing Stress

It’s been a few weeks since Spotty received his diagnosis. My vet came out to look at my horse and go over ultrasound images taken by my orthopedic specialist at the referral hospital. We came up with a game plan. Although the doctor who diagnosed him advised six to…

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Dealing with Tough Days and Their Accompanying Stress

Some days simply suck. There’s no way around it. You get bad news, things don’t go your way, you just have a generally bad day. One particular day a few weeks ago would definitely qualify. I took my current competition horse, Spotty, to an equine veterinary specialist for an evaluation…

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Reaching for Positivity Has Benefits for My Body

One way of managing a chronic disorder, particularly one that affects physical mobility and causes constant pain, is figuring out what treatment works for you. What helps me may not benefit you, and vice versa. I believe that sometimes a little trial and error…

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Massage Is a Critical Component of My Healing

Sometimes, we may have so many levels of embedded issues that it can be difficult to know where to start. For my horse Arti and me, massage and acupressure were critical to physical recovery. I don’t remember how I stumbled upon my first massage therapist, but I’m thankful…

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Learning Patience with a Racehorse Named Artica

To know me, it’s important that you know a bit about my past and the journey to my current style of Ehlers-Danlos syndrome (EDS) management. So, in my next few columns, I’ll cover my history and how various experiences helped me learn the ways I manage EDS. One…

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My 22-year Journey to Diagnosis

Ten years ago, at age 22, I was diagnosed with Ehlers-Danlos syndromes (EDS). I’d known there was something “wrong” with me long before I was 22, but despite having a doctor in the family who had been trying to figure out the mystery with several colleagues since I was…

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