e(X)perience (P)oints

IMG_1858Fifteen syllables….it takes fifteen syllables to name TitaniumAmy’s genetic condition. It only takes five syllables to say her whole name – middle name included!

TitaniumAmy has had a lot of barely-pronounceable labels through the years (osteomesopyknosis being a favorite), and every one of them names a different rare disorder. But now doctors say those can all be described with these fifteen syllables: xer-o-der-ma-pig-men-to-sum/trich-o-thi-o-dys-tro-phy. Or…XP/TTD.

We always try to be as honest and transparent with our girl about our her medical condition as we can. We want her to know about her body, and to feel empowered when she is visiting with doctors. So, today was the day to start unpacking those 15 syllables.

TitaniumAmy was practicing saying “trichothiodystrophy” today, but we didn’t know for sure how to pronounce it or what it meant…so she called the NIH (because when you’re super-rare you can apparently just do that). She found out that tricho (try-ko) means hair. Thio  (thigh-oh) means sulfur. Dystrophy (diss-trophy) means something isn’t growing the way it’s supposed to. She figured out how to say those seven syllables pretty well, but balked at xeroderma pigmentosum.

She decided we would stick with the shortened “XP,” making a quick connection to the fact that she has seen the letters XP together many times in her video games.

“XP…that stands for my experience points,” she said.

And so it does, TitaniumAmy…so it does.

 

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