Self-regulation in Barth syndrome: a qualitative perspective of adolescents, adults and parents in the U.K

BACKGROUND: Barth syndrome (BS) is a life-threatening genetic disease caused by abnormal lipids in the mitochondria of cells and mostly affects young males. Those living with BS have severe exercise intolerance, lethargy and fatigue due to muscle disease which affect their daily life. Previous resea...

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Detalles Bibliográficos
Autores principales: Searle, Aidan, Herbert, Georgia, Dabner, Lucy, Steward, Colin G., Damin, Michaela, Pieles, Guido
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8482682/
https://www.ncbi.nlm.nih.gov/pubmed/34587980
http://dx.doi.org/10.1186/s13023-021-02027-5

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