A great article for anyone who stumbles here and has a child with EE
“It’s very frightening when your child is first diagnosed with a rare disease and you feel all alone,” says Book, a physician and mother of two who lives in Atlanta. “It can be terrifying to come home from the doctor’s office and have to change the way you eat and cook overnight. I went from a mom who didn’t cook at all to a mom who could make anything from just one or two basic ingredients. A little water, oil and corn flour and you can make a pancake."