The Ehlers-Danlos syndromes (EDS) are a group of inherited systemic disorders related to the connective tissue. They are characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. This is leading to pain and fatigue. The problem is that as of today this disease is misunderstood by therapists. When people with such a disability enroll a rehabilitation program, occupational therapists don’t know how to help them effectively, and they very often fail to consider the fragility of their patients in an objective way. Patients are left on their own, not understood by the therapists, and finally deprived from any efficacious care and cure.
Therapeutic education for patients is an innovative way of therapy for chronic disease. We have undertaken a comparative study between rehabilitation program and therapeutic education for patients. We have sent electronic questionnaires to 18 affected people. The aim of this study was to explore the most appropriate treatment for people impacted by the Ehlers-Danlos syndrome, and to further define some potential axis of improvement for the targetted treatment.
One of this study’s main finding is that therapeutic education for patients led to a much higher level of independence than rehabilitation program in the space of meaningful activities thanks to empowerment and peer counseling. It would definitely be worthwhile to transpose those elements of enhancement in our daily professional activity for all patients. We hope that therapeutic indications for occupational therapists in our research paper will lead to an improved support for people with the Ehlers-Danlos syndrome.
Article rédigé par :
Sous la direction de Martine de Montgolfier