“Why them, why me, why us?” The experiences of parents of children with lysosomal acid lipase deficiency: an interpretative phenomenological analysis study

Abstract Background Lysosomal acid lipase deficiency (LALD) is an ultra-rare, inherited metabolic disease within the category of lysosomal storage disorders, affecting an infant’s ability to metabolise cholesterol. Developments in treatment, including Enzyme Replacement Therapy, have proven successf...

ver descrição completa

Detalhes bibliográficos

Principais autores:	S. Hassall, D. M. Smith, S. Rust, S. A. Jones, A. Wittkowski
Formato:	Artigo
Idioma:	Inglês
Publicado em:	BMC 2022-05-01
coleção:	Orphanet Journal of Rare Diseases
Assuntos:	Qualitative Parents Paediatrics Wolman disease Lived experience
Acesso em linha:	https://doi.org/10.1186/s13023-022-02335-4
Tags:	Adicionar Tag Sem tags, seja o primeiro a adicionar uma tag!