I agree wholeheartedly on the issue of child privacy. I don't use my real name on my blog, and don't post pictures of myself or my child. I've never posted my name or my child's name on this forum precisely because I am concerned about her privacy.
When we first brought her home, I told no one outside of our family about her ichthyosis. When asked questions, even by very good friends, I told people she had severe eczema and left it at that. After reading this forum for a while, I realized that I was doing her and the community a disservice by not talking about LI. I don't want her to grow up feeling that it is something to be embarrassed by or ashamed to have.
I am thinking about doing a general educational post about ichthyosis, talking about what we go through as parents of kids with this condition, and linking to the F.I.R.S.T. website. Is that agreeable to the majority of you, or would you prefer that I not write about the condition at all? I want to respect the community, and am amenable to whatever you all decide.
4 year old daughter with CIE