Monday, February 29, 2016

Rare Disease Day: Thanks Docs! From a Mom Parenting a Zebra

There's an old bit of advice given to doctors. If it has four legs and a mane, and you're not in Africa, it's probably a horse, not a zebra.

In other words, when diagnosing a patient, don't look for the rare diseases first, look for what is most common. And that makes sense.

But what happens when your child IS a zebra?

Today is Rare Disease Day, so in solidarity with other parents of rare disease kids, I offer up this ridiculously cute picture that sums up our world.
Photo of boy reading newspaper

Being the parent of a zebra means
a. lots of lab draws and appointments with specialist (in this photo he waits for yet another blood draw to test kidney levels)
b. (if you're a parent like me) lots and lots of research and reading whether it's
-- reaching out to the fifty other parents nation wide whose kid is like yours
--reading (and trying to comprehend) journal articles and college textbooks to learn the anatomy and medical language necessary to understand the lots of lab draws and appointments with specialists (see "a").

But don't feel sorry for us. The rewards are greater than the costs. I think that is ALSO summed up in the ridiculously cute picture above.

Happy Rare Disease Day. Thank you to all the doctors out there who are studying these rare cases. You're helping us find ways to make life as great as possible for kids like mine.

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