First of all let me start by saying that it is classified as a syndrome, not a disease. Although it does fall under the definition of disease, it is much more complex and thus called a syndrome.
I have adopted the term "disease" to try to signify the severity of it to onlookers and rudely inquisitive people.
Don't get me wrong, I welcome questions and would much rather explain it openly, but I do admit that my blood starts to boil when I hear whispers and comments behind my back as we pass strangers in the aisles of stores, "What's wrong with that baby?", "Oh my gosh! She got burned!","Look at that red baby!", and the most recent "What color are you?".
Once put to paper, so to speak, I guess they don't sound quite as bad as I interpret, but the tone in which they were uttered makes a vast difference.
Most of the time these comments are not made to my face and do not require an answer or explanation, and in previous years I was deeply upset by them and would hurry away trying to put as much distance as possible between us.
Lately I have confronted these ignorant exclamations and tried to explain that it was not caused by trauma, but genetics.
This is my answer:
"She was just born this way.
She has a rare genetic skin disease, and she will have it all her life.
There is no cure, only treatments.
It is not contagious, so you can't 'catch' it.
But she is still such a happy girl!"
Then I kiss her cheek.
And continue to answer their questions,
but now they are phrased delicately with concern and sympathy.
Part Two-The Diagnosis...coming soon.