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

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.