Rare diseases and sports: A pilot project to improve physical activity in patients with mucopolysaccharidosis

Abstract

This article deals with a Workshop (WS) designed for individuals with different kinds of Mucopolysaccharidosis (MPS). Physical activity plays a pivotal role in patient care, combining both somatic and mental effects, aiming to increase quality of life. Individuals with MPS frequently refrain from sports due to physical restrictions. Nine adults and one adolescent affected by different MPS-types and diverse physical disabilities participated at this WS. The participants were instructed to work in a circuit training (CT) and competed in a warm-up and cool-down ball game. Feedback about the exercises and documentation of the individuals’ everyday physical activities (PA) were evaluated with two questionnaires. The results of this evaluation show the importance of physical exercise programs to improve PA. Especially individual adapted elements of endurance, strength and social effects of “team play interactions” are important to promote social participation and personal development for MPS affected individuals. With aid of this pilot project, we want to assist in reducing concerns about physical activity as a source of injury. It could serve as a blueprint for other rare diseases (RD).