Self-Perception of Physical Problems in Patients with Non-Vascular Type of Ehlers–Danlos Syndrome: A Qualitative Study

Abstract

Background/Objectives: Ehlers–Danlos syndrome is a group of inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Ehlers–Danlos syndrome is associated with a broad spectrum of clinical manifestations, including chronic pain, severe fatigue, and a range of physical and psychological complications. This study aims to identify, in patients with non-vascular type of Ehlers–Danlos syndrome, the most common physical symptoms, the impact of these symptoms on daily life, and individuals’ perceptions of their health. Methods: A qualitative descriptive study based on content analysis was employed, reviewing 24 individual interviews to gain a comprehensive understanding of participants’ experiences. The study was conducted in accordance with the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines, which include a 32-item checklist commonly used in qualitative research. Results: Four main themes were identified: (1) Common physical symptoms, (2) Impact on daily life, (3) Impact on social and family relationships, and (4) Health perception and well-being. Conclusions: The analysis of the interviews reveals that individuals with Ehlers–Danlos syndrome face significant physical and emotional challenges. Physical symptoms, particularly chronic pain, fatigue, and joint issues, severely impact their ability to lead a normal life. These symptoms, along with perceived uncertainty and stress, contribute to a reduced quality of life, affecting both physical and emotional well-being.