My daughter Georgia is 16 months old and has relatively mild CIE. The biggest problem we've had lately is her face always has a bright red, slapped-cheek appearance. People are constantly making comments about it - is she sunburned? is she hot? did she just wake up? is she having an allergic reaction? I have two questions for everyone: 1) does anyone have any ideas on how to reduce the red in her face? Lotions make no difference. It occurs whether she's hot or cold. 2) what is the best thing to say to people who ask about it? I worry about how Georgia will handle this by herself in the future. Thanks, any advice is very much appreciated!

------------------

I have CIE and when I was younger my face was always red. Now it just has a slight pink glow (I'm 32).
The days that my face is red on it's own (without being hot or exercising) is because I am dehydrated and dry. I make sure I drink a lot of water, which does wonders for my body no matter what any doctor says. Usually when I put lotion on my face, it does get a bit red, but then goes back to pink. I think this is a thing that improves with age.
As for things to say. She'll learn what makes her comfortable to say as she gets older. When I was young, my parents told me to just say that I had a skin condition. For some reason that seemed to work. I guess people didn't know what to say after that. As for now,if someone is being rude, just look at them and say I would love to have that healthy glow that my daughter has. Can you imagine all the money she's going to save on makeup?

My son has LI. He almost always has a red face and someone always has a comment to make. I don't mind the comments as much as i do the stares. If someone makes a comment I can answer them and they will stop looking at him with that dumb look of curiosity and ignorance. However sometimes the look will change to pity which drives me crazy especially when they say, "poor baby". I don't think of him as a "poor baby" at all. I think he is a beutiful and amazing human being. It has taken me a long time to get past the anger at peoples ignorance. I realize now that anger is completely unhealthy for my son. The best thing I can do is have a positive attitude about the whole thing. Our children learn from our actions and I hope that he will learn to have a positive attitude from watching me and how i deal with the situation.

I love your post LeslieR. My thoughts exactly.

I second that threerxli,

That was a great post LeslieR. And Lisa Marie, that is what my mum and I told/tell people..."she/I have a skin condtion"...and that puts an end to any suggestions of abuse etc...

Just be honest, always the best policy...

I don't always feel like 'medicalising' (new word?!)my condition, so when people ask me if I had a sunburn or if I have been on a skiing trip (I am white around the eyes, as if I'have been wearing sunglasses...). I usually just say that my skin is very thin and that's why i'm so red/pink. It works every time and it is easy to say if you're a young child (I only thought of this two years ago..).