Dermatol. praxi. 2023;17(1):8-12 | DOI: 10.36290/der.2023.001

Care for children with epidermolysis bullosa

Mgr. Petra Šimánková

Slezská univerzita v Opavě, Fakulta veřejných politik, Ústav nelékařských zdravotnických studií, Opava

Children with epidermolysis bullosa (EB) are a rare population with high morbidity and mortality. EB has a profound impact on the daily life of the patient and family members, on the child's physical, psychological and mental health, including disruption of social relationships. It is common for EB patients to be cared for by health professionals who are not specialized in this rare disorder. Health professionals educate parents about safety and preventive steps in caring for a child with EB, how to treat the child, how to recognize the characteristics of a wound, how to care for wounds, how to breastfeed and feed the child, etc. Increasing the knowledge of all healthcare professionals on EB issues, including age at clinical diagnosis and severe clinical signs, will support the optimisation of healthcare and nursing practices and contribute to improving the quality of life of paediatric patients with EB.

Keywords: epidermolysis bullosa, children, prognosis, complications, nursing care.

Accepted: March 23, 2023; Published: March 28, 2023  Show citation