Retrospective study details ED visits for pediatric epidermolysis bullosa

A retrospective study from a Spanish tertiary pediatric emergency department, a national EB reference center, analyzed 169 ED visits by 29 children with confirmed epidermolysis bullosa (2011-2025). The study reported infections (42.6%), gastrointestinal complications including esophageal involvement (22.5%), and gastrostomy-related problems (14.2%) as the leading reasons for consultation, with wound cultures positive in 83.3% of cases tested and anemia present in 83.3% of cases where hemoglobin was measured. The study also found venous access was difficult in 23.2% of visits, hospital admission was required in 31% of visits (4.7% to intensive care), and two deaths were recorded, leading the authors to note that improved clinician training and standardized care pathways may enhance emergency care for this population.

Most relevant for: Children with epidermolysis bullosa, particularly the recessive dystrophic subtype, presenting to emergency departments with infections, gastrointestinal complications, or vascular access needs.

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