I realize that September is almost over and this is woefully overdue. Perhaps I just need to vent a little.

In trying to educate those who show a genuine interest in the condition I am very open to others about it. There seems to be a hurdle in my explanation that prevents those I'm chatting with from total understanding. When they ask me why I can't just exfoliate like they do I'm at a loss.

All I can do is go home, play with my dogs, kiss my husband and chuckle. Then it's all better again.
So, what baffles you?

I have just gone on to being brief but firm because frankly, people just phase out if you start trying to explain it. I will answer specific questions, but I don't offer additional information because the reality is most people just have morbid curiosity and aren't really interested in the facts.
The thing I hate is that I can't explain to people how my EHK compounds any problem someone else might have. You think your bra is uncomfortable? Try wearing one AND having EHK. The underwire digs into me just like it does to you AND it gives me blisters making it feel like it's made out of broken glass.
The polyester uniform at your job is ugly? Try wearing it when it makes your skin bleed! (I HATE unnatural fibers!)
Hair on your upper lip? Try getting a wax when you have EHK!
No I can't do the walk-a-thon, not because it will tie up my Saturday or that it's raining, but because my feet will blister and walking in the rain in wet clothes will leave me raw for a week.
YOU think it's not too hot in the office? Try being smothered by your own skin and not being able to sweat! Turn the damn heat down!!
Oh I have a long list of things that I simply cannot explain to people because they think it's "just dry skin" and it just gets harder and harder to leave the house all the time! I am trying to deal with my "anger" issues but it just gets to be too much sometimes and I am leaning more and more to just not dealing with people at all.

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

Ugh, I hate when people say "I must have the same thing as you because my elbows are really dry!"
Insert bad words here...

What about "I expect she will grow out of it."

That one is really beginning to get on my nerves!! Then when you explain that she won't, you often get a long and involved story about some child who used to have severe excema and is fine now, followed by "Well, you never know."

Actually, I do know!

It's just like psoriasis or eczema, right? Don't they have pills for that now?

This one happened just the other day.....

"Wow, don't they have a cream or something for that?"

I almost responded with a really snarky tone "Sure! It's from the same company that made that pill to be taller. I guess you haven't tried that."

Yeah, this person was a little vertically challenged.

Instead, I smiled and remembered the last time my brother played an epic prank on me. I've decided to be polite and not delve into details. The folks that love me won't care - same reason I wore a short sleaved wedding gown!