Dutch specialists were interested in 20 patients with facio-scapulo-humeral myopathy (FSH) aged between 2 and 17 years. Among them were patients with the infantile form of the disease (with onset before the age of 5). The patients were followed at the functional level but also by muscle imaging for two years:
- if the disease progresses over time, the evolutionary profile is quite variable from one child to another,
- some children may even continue to make progress in motor skills,
- pain and fatigue were frequently reported: they contribute to a poorer quality of life and require adequate management.
This study will be useful for the design of future therapeutic trials in this population of FSH patients.
