Medical advancements and specialized care for epidermolysis bullosa patients

Healthcare providers in Paraguay and Spain are implementing specialized care protocols for patients living with epidermolysis bullosa (EB), a genetic condition commonly known as ‘butterfly skin’ that causes extreme skin and mucosal fragility.

In Paraguay, the Acosta Ñu Pediatric General Hospital has provided comprehensive care since 2009. The hospital currently manages 16 pediatric patients, including those with simple, dystrophic, and Kindler variants of the disease. This specialized medical response was initiated after pediatric dermatologist Olga Gutiérrez identified a long-unmet diagnostic need.

In Spain, the Andalusian health system has established a preventive dentistry network to support EB patients. This initiative involves primary care dentists who will implement strict asepsis and antisepsia protocols to prevent oral infections and complications, such as mandibular osteonecrosis. This network follows successful pilot programs in Seville and Malaga.

Additionally, the Andalusian regional government has funded access to Vyjuvek, a topical gene therapy not covered by the national pharmaceutical portfolio. To date, 15 people in the region have benefited from this treatment, with users distributed across provinces including Almería, Seville, Malaga, Jaén, Cádiz, Córdoba, and Huelva.