ABSTRACT: Epidermolysis bullosa (EB) is a rare genetic disorder that manifests by producing blisters on the skin. To date, this condition is incurable. The classification of EB has been divided into four major forms with numerous subtypes. The subtype of EB often predicts the prognosis of each individual. All children will require management of their condition to prevent complications, which may include infection and scarring. Children with this diagnosis are best managed by a multidisciplinary team designed to specifically meet the needs of a child with EB. However, the lack of specialty clinics in many areas necessitates that parents advocate for their child(ren) and have a comprehensive treatment plan in place. Nurses can assist families in understanding the diagnosis and coordinating the needs of the affected child. The purposes of this article are to discuss the challenges of caring for a child with EB and to review the components of a comprehensive care plan to be instituted by the primary caregivers for the child living with EB.
Kellie S. Badger, BS, RN, Phoenix Children’s Hospital, Arizona.
Judith O’Haver, PhD, RN, CPNP-PC, Phoenix Children’s Hospital, Arizona.
Harper Price, MD, FAAD, FAAP, Phoenix Children’s Hospital, Arizona.
The authors declare no conflicts of interest.
Correspondence concerning this article should be addressed to Kellie S. Badger, BS, RN, Phoenix Children’s Hospital, 1919 E. Thomas Rd., Phoenix, AZ 85016. E-mail: email@example.com