For the Little Zebras out there... a gift

 

This weekend I spent my time focused on Little Zebras, those kids out there like I was in my childhood- chronically ill and spending far too much time in hospitals and doctor offices. It took me 50 years of those visits before I finally found out I was born a Zebra a couple of times over with various conditions such as Bertolotti Syndrome and Ehlers-Danlos Syndrome.  

Zebra conditions can include and are not limited to: Ehlers-Danlos Syndromes, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Guillain-Barré Syndrome, Cystic Fibrosis, Lymphangioleiomyomatosis - just to name a few.

Why are they considered Zebra conditions? The term "zebra" for rare medical conditions originates from a medical teaching adage, popularized in the late 1940s by Dr. Theodore Woodward, a professor at the University of Maryland School of Medicine. He advised his students: "When you hear hoofbeats, think of horses, not zebras."

This metaphor encourages doctors to first consider common explanations (like horses, which are common in most places) for a patient's symptoms, rather than immediately assuming an uncommon or exotic cause (like a zebra, which is far less likely in regions where horses dominate). The goal is to promote efficient, probabilistic thinking in diagnosis, avoiding unnecessary pursuit of unlikely possibilities early on.

And yes, children are born Zebras and they too suffer the road to diagnosis, like I did. I guess this is why this topic is so important to me. Doctors didn't have answers for me back then, despite all the hospitalizations, the tests, and the surgeries. As a kid I felt like a freak of nature and when I couldn't answer questions from other kids about why I was sick all the time, well - yeah, imagine. It increased too as I got older, as did some of the negative responses.

If we can empower children from a young age to know, understand and advocate for their health needs, maybe we can then start the change reaction that will help more adults like I was a few years ago - still searching for answers and sliding a slippery slope. , and advocate for the health needs, maybe we can then start the change reaction that will help more adults like I was a few years ago - still searching for answers and sliding down a slope.

The publications are free. Just print out the pages, staple them or put them in a binder. Throw in other information and activities for your child. Make it a special book that can go with them to the hospital or on those long waits at doctor offices.

The Winged Zebra came about because of the Zebra mascot for rare disorders and also because of my childhood love for Pegasus -the winged horse. I always wanted to know what it was like to be such a creature and just fly over all the chaos when I was sick as a kid. Naturally, the two morphed into one, in my head, once I was diagnosed.

So, enjoy. Remember , any issues accessing these, just drop me a note or comment and I will get the pdf to you!

Winged Zebra Takes Flight -

Winged Zebra’s Safe Harbor -