The Worst Disease You've Never Heard Of: Caring for Children with Epidermolysis Bullosa
Bailey Brown, BS ’20
Children with epidermolysis bullosa are often called butterfly children—their skin seems to be as fragile as a butterfly’s wing. While there is no cure for EB, ongoing clinical trials have developed treatments to manage symptoms. Public health clinicians can help patients and their families build support networks by connecting them to local support groups and other families caring for children with EB.