The lived experience of facioscapulohumeral muscular dystrophy: A systematic review and synthesis of the qualitative literature.
Roisin MurrayClare M DonnellyKent D DrescherChristopher D GrahamPublished in: Muscle & nerve (2023)
The lived experience of pwFSHD is characterized by physical, emotional, and social challenges that impact on engagement with life, particularly as symptoms progress. Further research is needed to provide a fuller understanding of the experience of pain in FSHD and of the lived experience of FSHD across cultures.