Effects of multidisciplinary rehabilitation in a patient with Ehlers-Danlos and Behçet's syndromes: a paradigmatic case report according to the narrative medicine

Disabil Rehabil. 2023 Nov 19:1-8. doi: 10.1080/09638288.2023.2283104. Online ahead of print.

Abstract

Purpose: Narrative Medicine complements the clinically centered approach, which focuses on the analytical and sanitary aspects, with the illness- and disorder- centered models, which deal respectively, with personal coping and social perception of a condition. Hypermobile Ehlers- Danlos Syndrome and Behçet's Disease are two rare multisystemic chronic disease experienced a myriad of clinical symptoms, psychological distress, and poor quality of life. The purpose of this report is to describe application of a multidisclipinary rehabilitation intervention according to the narrative medicine.

Case description and intervention: a 35-year-old woman with a 23-year history of Hypermobile Ehlers-Danlos Syndrome and Behçet's Disease was admitted. A multimodal rehabilitation approach was implemented and described through the patient's feelings and expected short-, medium-, and long- terms goals. Moreover, she reported her feeling with periodical interview by her therapist.

History patient: The patient was seen for 32 weeks. A decreased pain, as well as improved function was recorded immediately post-intervention.

Conclusion: Narration is not just an interpretation of the illness experience, but the result of reshaping the interpretations of the story that both patient and health professional. This discipline provides enrichment of care, especially when combined with rehabilitation in chronic disease, by paying attention to and using even in the therapeutic phase the stories of patients, family and health care personnel, giving the opportunity to define a tailored effectiveness rehabilitation approach at the light of the different points of view of the subjects.

Keywords: Narrative medicine; behçet’s disease; hypermobile Ehlers-Danlos syndrome; quality of life; rehabilitation.

Plain language summary

Narrative Medicine might play a key role in an interpretation of the illness experience to implement a multidisciplinary tailored rehabilitation approach.Narrative Medicine can help understand discomfort and difficulty associated with rehabilitation activities, thereby enhancing patient motivation and participation in interdisciplinary care.The Ehlers–Danlos Syndrome is a heterogeneous group of heritable connective tissue disorders representing a challenge in rehabilitation.Behçet’s Disease is a rare multisystemic chronic disease experiencing an impaired function and a poor quality of life.A patient-oriented multimodal rehabilitation showed to be a useful approach in the case with both diseases, with a reduction of pain and an improvement of functioning.