Living with EB
Imagine waking up in the middle of the night to the sound of a crying child who has painful blisters that have been part of their life since birth. The slightest friction produces agonizing wounds that can cover up to 75% of their frail bodies. You want to hold them and comfort them but you can’t. They are affectionately referred to as “Butterfly Children” because their skin is as fragile as a butterfly’s wing.
A cure for EB means no child will have to endure the constant pain and suffering caused by this devastating illness. Families of Butterfly Children like Robby will get the support for the daily care they require from programs and services that have made debra of America a lifeline for the EB Community. Until there is a cure for EB, debra of America will continue to be a source of support for families.
Robby’s blisters must be popped, drained and dressed at the start of every day to prevent infection. Every blister is punctured in several places with a sterile blade or needle then drained of all its fluid. debra of America's EB Nurse Educator program educates EB families about the proper techniques needed to care for their EB child.
Robby’s typical bandage change is extremely painful, takes one to three hours and often involves the assistance of a visiting nurse provided by debra of America. The nurse assists the family. New bandages must be applied one limb or body part at a time to protect damaged skin and reduce chances of infection from oozing wounds.
For Robby, blistering in his oral cavity, fused oral vestibules and smaller than normal mouth opening make it impossible to brush or floss his teeth. His mother must gently clean his mouth by hand. EB families have access to new developments in treatment methods through the biennial debra Care Conference.
Gastrostomy Tube Insertion
Robby has a gastrostomy tube inserted into his stomach for the delivery of supplemental nutrients, fluids and medications because blisters in his esophagus make it difficult for him to swallow. debra of America provides a Physician Referral network for families in need of special assistance for complications such as this.