Epidermolysis Bullosa: medical, physical and emotional challenges

Epidermólisis Bullosa: desafíos médicos, físicos y emocionales

Introduction: Epidermolysis Bullosa, also known as "Butterfly Skin", is a “rare and orphan” autoimmune disease that affects the genetic structure of the epidermis, causing the formation of blisters and skin retractions. People who suffer from it, most of the time, suffer from rejection and isolation.

Objective: Design an information booklet on Epidermolysis Bullosa for the basic education educational community of the department of Boyacá.

Materials and methods: Qualitative approach study, descriptive, interpretive and analytical in nature that followed the parameters of the PRISMA (2020) systematic reviews. It was developed in 3 stages. 1. Bibliographic search in open access databases such as Scielo, Scopus, Dialnet and Redalyc, among others, with search equations. 2. Systematization of more than 70 articles. 3. Selection of information to fulfill the objective.

Results: Research seeks ways to relieve symptoms and prevent complications. For its treatment, a multidisciplinary approach is necessary that includes dermatologists, psychologists, physiotherapists and nutritionists, among other health professionals, as well as education, to address the physical and emotional challenges that patients face, especially in the early years.

Conclusions: The challenges focus on early diagnosis, a fundamental aspect for the initiation of treatment; and health strategies aimed at the care and control of the disease. It is necessary for school communities to inform themselves, not to stigmatize and isolate those who suffer from it; From the psychological aspects, support for both those affected and their families is essential.

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