my favorite:
"how's Ivy doing?"
"oh, she's fine, thanks."
"no, no, how's her skin?"
I agree with Glori, most of the time everyone tunes out before you can really explain. Or they try to come up with something similar to what they know and understand to help them categorize EHK. My grandmother was convinced for most of the first year of Ivy's life that she was going to fall to pieces every time anyone touched her. This was because all grandma had known when it comes to skin conditions was a cousin with really severe EB. Most people have no point of reference for EHK or ichthyosis so they equate it to what they do know...toxic buildups, allergies, eczema, etc.
I end up just saying "she's doing great." and then move on!
~Lizzy