Brandy and Cameron
Hi! My name is Brandy and I am 28 years old and have EB Simplex. This I inherited from my father. Unfortunately I grew up without him and any of his family. My mother didnt know how I felt or what to do for me. She tried but I always felt alone with MY PROBLEM. I didnt even know there was a name for what I had or that anyone else in the world (except my biological father) had the disease. I became a mother at the young age of 18 to a precious GOD sent little boy. Cameron who is 10 now also has EB Simplex. Just the same as myself he is picked on a lot by other children. This breaks my heart for him and as much as I wish I could bare every blister myself for him I cant. I would like so much however to talk to his classmates and help them to understand why his feet always hurt. Espescially those who stomp on his feet when they see him walking "funny" and ask him afterwards "whats the matter do your feet hurt?" I am not very informed about EB and need some good advice from someone on talking to my son and his class. Please e-mail me with anything you think might be helpful to us. I also have learned from experiance some good tips on what to and not to do in order to help with blistering. I would like to share these tips with others and hear some of yours. My son would also be glad to hear from other kids who understand as well. I am sure he feels "differant" and this may help to ease his mind as well as your child too. THANKS SO MUCH FOR YOUR TIME.