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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...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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Materias: | |
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 |