Marfan syndrome in childhood: parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study

BACKGROUND: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifes...

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Publicat a:BMC Pediatr
Autors principals: Warnink-Kavelaars, Jessica, Beelen, Anita, Dekker, Sarah, Nollet, Frans, Menke, Leonie A., Engelbert, Raoul H. H.
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2019
Matèries:
Research Article
Accés en línia:https://ncbi.nlm.nih.gov/pmc/articles/PMC6661807/
https://ncbi.nlm.nih.gov/pubmed/31357961
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s12887-019-1612-6
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