Pegah Rahbarinejad - Department of Nutrition, school of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
Fatemeh Sadat Hashemi Javaheri - Department of Nutrition, school of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
Mostafa Shahraki Jazinaki - Department of Nutrition, school of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
Hamid Reza Kianifar - Department of Pediatric, Faculty of Medicine, Mashhad University of Medical sciences, Mashhad, Iran
Saeedeh Talebi - Department of Pediatric, Faculty of Medicine, Mashhad University of Medical sciences, Mashhad, Iran

Introduction: Epidermolysis bullosa (EB) represents a diverse set of disorders that affect the skin and mucous membranes. Ensuring proper nutrition for children and adolescents with Epidermolysis Bullosa is a vital aspect of their treatment plan. The objective of this study is to demonstrate how nutritional intervention in a specialized nutrition clinic can enhance their well-being.Methods and material: This longitudinal study was conducted over a ۳-year period at Akbar Children Hospital, a tertiary facility affiliated with Mashhad University of Medical Sciences in Iran. The study included all patients diagnosed with EB based on clinical symptoms and genetic studies.Results: In the present study, the median (۲۵-۷۵ IQR) age of the participants was ۸۱.۰ (۳۶.۰-۱۵۶.۰) months, and ۱۹% of the participants were girls. The median (۲۵-۷۵ IQR) weight was ۱۷.۵ (۱۰.۸-۲۴.۵) kg, and the mean ± SD of height was ۱۰۹.۹ ± ۳۱.۱ cm. Among all types of malnutrition, there was only a significant association between gastrointestinal complications and BMI-for-age z-score (OR: ۰.۰۸, P-value=۰.۰۳۹) in the crude model. After adjustment, there was no significant association between gastrointestinal complications and malnutrition. The mean values of weight at the baseline, the first, and the second appointment of the study were ۲۱.۳, ۲۱.۲, and ۲۴.۸ kg, respectively. Moreover, the mean height at the baseline, the first, and the second appointment of the study were ۱۰۹.۴, ۱۲۱.۰, and ۱۲۳.۴ cm, respectively.Conclusion: Regular clinic visits and tailored nutritional interventions positively impact EB patients, emphasizing the importance of managing anemia and deficiencies for their well-being.

Keywords: Epidermolysis bullosa (EB), Nutritional support, Children, Adolescents