This page was last updated on: December 22, 2007
As with any person, a healthy diet is extremely important. For patients with Recessive Dystrophic Epidermolysis Bullosa this can be a very tough task to accomplish. Because of constant breakdown of the skin, the body uses its own resources to heal itself. This results in most RDEB patients to suffer from malnutrition, as well as iron-deficiency Anemia. It can be very difficult to maintain or ever get to a healthy weight, especially without the help of a G-tube.
I used to have a G-tube but had too many complications so I struggle to maintain my health and eat enough only by mouth. Because RDEB also effects the mouth and throat it makes it all the more difficult. I had to have all my teeth removed because they decayed so badly. I can't get dentures because there's no way to attach them without hurting my gums. I do have two teeth which are actually quite useful and I can at fairly normally with just two. The Nutrition Problems page will have information on many of the common problems that effect RDEB patients nutritionally including dental care, acid reflux, anemia, esophageal stricturing, constipation and information on common surgical procedures related to these things.
The next page called Boosting Your Diet lists lots of foods that are high calorie, protein, iron, zinc and fiber.
Next is a page with basic information on How to Puree food. Just because you may need a soft or pureed diet doesn't mean you still can't eat with dignity and enthusiasm!
If that's not enough, next are loads of pages with EB friendly Recipes, most of which I enjoy myself! All of these recipes are either soft, smushable or pureed and filled with calories and protein.
Check it out!
Finally there's a lot of nutrition related links on the EB Links page. So check it out!
IMPORTANT!
Please remember I am NOT a doctor, but a patient wanting to share info and tips that have worked for me and some other RDEB patients. But every person is different so please discuss any diet changes with your doctor first!
Diet and Nutrition for RDEB Patients
Welcome! This is the main page of the EB Diet and Nutrition section!
