Optimisation de la prise en charge par l’activité physique des patients atteints d’un syndrome d’Ehlers-Danlos hypermobile

Introduction

Hypermobile Ehlers-Danlos syndrome (hEDS) is a hereditary connective tissue disorder with a wide phenotypic variability. The aim of this thesis was to optimize the management by physical activity of hEDS patients.

Methods

To meet this objective, five studies were conducted. The first study (questionnaire with Delphi method) showed that pain, fatigue and sleep disorders, as well as musculoskeletal disorders, were among the most important symptoms to assess according to patients.

Results

Two studies (retrospective and prospective) were conducted on the effects of a rehabilitation program, demonstrating the benefits of this form of care in many health areas. Finally, two studies on respiratory physiology showed ventilatory mechanical constraints during exercise and altered perception of lung volume and erratic ventilation when performing a cognitive task.