Date of Graduation

5-2025

Document Type

Thesis

Degree Name

Bachelor of Science

Degree Level

Undergraduate

Department

Health, Human Performance and Recreation

Advisor/Mentor

Hill, Julie

Committee Member

McGee, Josh

Abstract

Hypermobile type Ehlers-Danlos Syndrome (hEDS) is a subtype of Ehlers-Danlos Syndrome, a genetic connective tissue disorder with complexities involving joint hypermobility, tissue fragility and severe pain. Patients with hEDS often experience misdiagnosis, medical dismissal and years of waiting for a diagnosis. This study aims to evaluate the quality of life and diagnostic journey for patients living with hEDS. Qualitative, cross-sectional and semi-structured interviews were conducted in this study using a descriptive, phenomenological methodological approach. The specific phenomenon is the experience of the hEDS diagnosis and how that diagnosis further impacts patient life. The two primary research questions that we aimed to answer in this study include 1) What is the lived experience of someone being diagnosed with hEDS in the United States? 2) What impact did this diagnosis have on their life? Descriptive phenomenology examines the individual's experiences, behaviors and motivations. hEDS patients were the target population of this study. Patients were recruited via volunteer sampling through social media. Seventeen women with hEDS were screened and required to complete a demographic survey following informed consent. The selected interview questions aimed to learn more about each individual's journey before, during and after diagnosis. The transcribed interviews were observed with thematic analysis which included separating the stated information into several codes which encompassed the diagnostic odyssey. After thoroughly coding all interviews, six themes were identified: 1) The journey to hEDS can be long, complicated and frustrating, a proper diagnosis can be reliving and validating, self-advocacy is crucial, coping with hEDS requires many tools in the toolbox, doctors can make or break the hEDS experience for patients and hEDS impacts mental health just as much as physical health. This study has highlighted important issues that patients with hEDS commonly experience while living with hEDS and validates the difficulty that comes along with an hEDS diagnosis. From this study, we can recognize the importance of advocacy and coping skills in order to medically and mentally manage an hEDS diagnosis. We also see a necessity for medical providers to be properly educated of the manifestations of hEDS in order to reduce the diagnostic timeline and medical gaslighting that the patient experiences.

Keywords

Coping; Diagnostic Odyssey; Quality of life; Comorbidities

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Available for download on Saturday, May 02, 2026

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