A 23-year-old Dutch man with a moderate form of X-linked mytotubular myopathy describes his experience of physical training and its benefits in a publication:
- inclusion in the Nathis-CNM natural history study in 2015 and the prospect of entering the Unite-CNM clinical trial triggered his decision to improve his fitness and stick to it;
- the introduction in 2018 of a daily routine of muscle-strengthening exercises and walking has enabled him to cover longer distances (500 m in 2018 to over 7 km in 2023), improve his physical strength and breathing capacity;
- for him, his motivation and training have acted as a form of therapy to take control of his dysfunctional body.
This experience, punctuated by highs and lows (Covid period, intercurrent illnesses…), losses and recoveries in performance, shows how important it is to mobilize motivation to achieve physical goals, even when illness at first invites doubts about one’s future and performance.
