Careers in Healthcare and Self-Advocacy in the hEDS Community

• In Event: 20820 - Section on Medical Sociology Roundtables
  In Refereed Roundtable (90 minute): Table 20. Patient Experiences and Diagnostic Processes I

Abstract

This study investigates the gender disparity in the diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS), a progressive connective tissue disorder. Despite the genes for EDS not being sex-linked, approximately 70% of diagnoses are women, prompting the question: why are men diagnosed at such lower rates? This research explores the role of self-advocacy, proximity to healthcare careers, and gender dynamics in shaping patients' experiences in seeking a diagnosis. The study combines quantitative surveys and qualitative interviews to examine three key questions: (1) Do self-advocacy practices differ between men and women? (2) Does proximity to healthcare careers enhance self-advocacy? (3) How do gendered patterns in the healthcare industry influence self-advocacy practices? Preliminary findings suggest that individuals with direct healthcare connections exhibit greater confidence in navigating the medical system, while those with only familial connections may face challenges in recognizing and advocating for a correct diagnosis. The research also investigates how gender biases and the underrepresentation of men in clinical roles may impact diagnosis and treatment. By exploring these intersecting factors, this study aims to provide a comprehensive understanding of the barriers contributing to delayed or overlooked diagnoses of hEDS, with potential implications for improving healthcare practices and policies to create more equitable, patient-centered care.

Author

• Rebecca Lynn Shields, University of Arizona