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Keywords

Caregiver Stress, Epidermolysis Bullosa, Quality of Life, Rare Disease, Psychosocial Impact of Chronic Disease

 

Authors

  1. Bodan, Rebecca Cross

Abstract

ABSTRACT: Epidermolysis bullosa (EB) is a group of rare, genetic connective tissue disorders that typically presents itself at birth or in early infancy. The primary manifestation for most with the condition involves blisters and skin erosions in response to mild trauma. For patients, it can be a challenging experience to encounter providers with no more than textbook knowledge about the condition; given the rarity of EB, this is not an uncommon experience. A greater understanding of the day-to-day struggles may give more insight into areas where the pediatric healthcare community can provide more supportive services to families enduring the hardships and struggles of caring for a child with this rare genetic condition. This article will expound on the experience of one healthcare provider whose daughter was born with a severe form of EB simplex and provide recommendations for improving best practices for patients and families.