Have you ever eaten way too much and gained a few pounds? Or come across a child unwilling to eat their vegetables or are just too picky about their food? I have two words to say…“I WISH!”
Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a relentless disease that does not stop at just compromising the skin. 
Sadly, it also affects mucosal membranes like the mouth, throat and esophagus which makes eating and EVEN drinking a chore. Eating is a distant memory for me as well as the anticipation of savoring my mom’s dinners, as the delicious aroma fills the house.
Food has always been an important part of my life. As a baby, an eye dropper was often used because sucking was just too painful for my raw, blistered tongue and mouth. As a young girl, I remember sitting for hours on the couch with my mom playing the tasting game. Wiling away the time when stricken with corneal abrasions, delighting in sampling the tiny morsels of food that she took the time to prepare and arrange. The g-tube saved my life at age nine weighing in at 42 pounds but swallowing struggles progressed. Who ever thought that a pureed breaded pork chop, mashed potatoes and cauliflower could taste so good?
As I write this article, plans are underway for my third esophageal dilatation at Cincinnati Children’s Hospital. I am not looking forward to the surgery, but am eagerly anticipating regaining the ability to swallow my saliva and a few soft foods that I haven’t tasted in months. I am so grateful to debra of America for providing a life-saving network of families and medical providers for the past twenty-two years. Special thanks to Arlene Pessar, the founder of this wonderful organization and her son, Eric. May he rest in peace.
Before you complain about eating too much, gaining weight, or disliking the food you are served, relish that precious morsel one bite at a time…consider it, just for me!
Kristin Nugent
Clifton, NJ
