Tuesday, August 26, 2014

Giddy Up~You've Found a Zebra

Tammie, why is it called the #WAGRzebrachallenge ?

Last Wednesday, I wrote from my heart about how I felt regarding the #ALSicebucketchallenge and challenged my zebra lovers around the world to take on a challenge to promote awareness of WAGR/11p Deletion Syndrome.

I must say, I'm thrilled with the results, as are many of our WAGR families.  I received e-mails from families that have brought tears to my eyes.  This has served as an amazing way for our families to FEEL the love and support of their friends and loved ones just by posting a picture and taking the challenge to share.  

Many families have asked me though, why zebras?

Have you ever noticed how, when you "know" the language, you don't even realize what parts of a language might be "slang" and unknown to others around you?  I didn't even think about the fact that not EVERYONE knows why we call our loved ones with WAGR zebras!

Here's where it stems from...it's actually a term frequently used in the rare disease community...

In the late 1940s, a professor at the University of Maryland School of Medicine coined an unusual phrase to describe unexpected diagnoses. “When you hear hoofbeats behind you, don’t expect to see a zebra,” he said. The phrase stuck and today, medics commonly use the term “zebra” to describe a rare disease, usually defined as one that occurs in less than 1 in 2000 of the population. (accessed on the web at MIT Technology Review on 8/26/2014)

So, when our kids have a raging stomach ache, and are in excruciating pain...a doctor might think "food poisoning" or "stomach flu"... but people with WAGR are at risk for developing pancreatitis...so, you might have to look for the zebra and not the horse.

When Evie gets a bug bite, and I get a little anxious and people think, "It's JUST a bug bite..." I can say, "Yes, well...those have turned into staph infections and cellulitis more than once in her life..."  I have to watch that bite and even draw a circle around it to make sure it doesn't grow too much bigger or we will be on our way to the doctor.  I'm looking at a zebra...not a horse.

So, tomorrow is the day that I'll write about how our little week long #WAGRzebrachallenge turned out.  I didn't have plans to do this, but I am loving the results.  Seeing that Rare Disease Day 2015 is just a few months away, I think I'll get my mind twirling and see how we can do this again in a well planned and executed manner.  

But for now, keep those posts coming on Facebook and Twitter#WAGRzebrachallenge ... call out your friends to take a picture wearing zebra print, with a zebra at a zoo, or just even a picture with one of our favorite zebras with WAGR.  

We love to feel all the support!

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