Patient Education Program and Ehlers-Danlos Syndrome
Patient Education Program and Ehlers-Danlos Syndrome
The Ehlers-Danlos Syndrome (SED) comprises a group of clinically and genetically
 heterogeneous, inherited connective tissue diseases. The hypermobility type is the most
 frequent. It is characterized by a generalized joint hypermobility and a hyperextension skin.

 Chronic pain syndrome is often present. Its psychological impact can be significant (anxiety,
 depression, impact on the quality of life of the patients). The disease also requires changes
 and a permanent adaptability (coping). It can lead to feelings of isolation and
 misunderstanding.

 The French association of the Ehlers-Danlos Syndromes and the rehabilitation center of the
 'Croix-Rouge Française des Massues' propose a patient education program for the patients with
 a hypermobility type SED (the PrEduSED program). This education program is open to patients
 and their caregivers located in France.

 The research hypothesis is that the PrEduSED program improves their coping and reduces
 patient anxiety at 6 months (these are the two clinical criteria on which the PrEduSED could
 have the most impact, given the results of the first sessions).
Inclusion Criteria:

 Patients

 -  adults (>18 years)

 -  hypermobility type Ehlers-Danlos Syndrome

 -  participating to one education session during the study period

 Caregivers

 -  adults (>18 years)

 -  caregivers of patients with hypermobility type Ehlers-Danlos Syndrome

 -  participating to one education session during the study period