Black and Blue Ribbons - a Column by Karen Del Vecchio

massage, 2020, finger, fracture, awareness, sign, surge capacity, tension

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.

It’s Time for Invisalign, Round 2

A few months ago, when I finally returned to the dentist after being fully vaccinated for COVID-19, we talked about redoing my Invisalign. Although I had braces as a teenager, my teeth began to shift again as I got older. While it wasn’t too bad yet, my dentist told me…

How Visible Is My Ehlers-Danlos Syndrome?

Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.

Not All Positivity Is Created Equal

Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…

Are My Unique Massage Reactions Related to EDS?

I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…