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Choosing Life with Spinal Muscular Atrophy Type 1

This article is co-authored by the mother of a patient with spinal muscular atrophy (SMA), two pediatric pulmonologists and the pediatric neurologist in the team. It describes the patient and their family’s experience of living with SMA. This commentary describes the mother’s experience of the diagn...

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Detalles Bibliográficos
Autores principales: Lavie, Moran, Nisnkorn, Hodaya, Sagi, Liora, Amirav, Israel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7467466/
https://www.ncbi.nlm.nih.gov/pubmed/32306245
http://dx.doi.org/10.1007/s12325-020-01340-y
Descripción
Sumario:This article is co-authored by the mother of a patient with spinal muscular atrophy (SMA), two pediatric pulmonologists and the pediatric neurologist in the team. It describes the patient and their family’s experience of living with SMA. This commentary describes the mother’s experience of the diagnosis and treatment process of her daughter’s SMA in an era of emerging treatments for a disease which was until recently considered incurable. SMA diagnosis and management in the context of the patient mother’s experiences is discussed.