Reframing the Care of Children With Epidermolysis Bullosa Through the Lens of Medical Trauma

Abstract

ABSTRACT Epidermolysis bullosa (EB) is a group of rare inherited genetic connective tissue disorders causing blisters and skin erosions, in addition to a number of other extracutaneous complications. There is currently no Food and Drug Administration-approved treatment for EB, and the current mainstay of disease management involves frequent, prolonged, and extensive wound care, which is often traumatic for the child and caregivers alike. Because of the potential for extensive wounds and other complications, children with moderate to severe forms of EB experience significant amounts of medical trauma related to their condition, both in a medical setting and in the community. Exposure to pediatric medical trauma has been linked to poor health outcomes and increased psychosocial sequelae. Thus, this article seeks to provide an in-depth discussion of the potential sources of trauma children with EB face on a daily basis, along with some practical trauma-informed interventions that healthcare providers may consider implementing in an attempt to alleviate some of the suffering and build resilience among those affected by this potentially devastating and life-limiting condition.