Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common subtype of rare connective tissue disorder called Ehlers-Danlos Syndrome (EDS). Hypermobile Spectrum Disorder (HSD) is a connective tissue disorder that presents itself similarly to hEDS. Both disorders primarily affect individuals assigned to females at birth (AFAB), and symptoms range from joint instability, musculoskeletal pain, dizziness, fatigue, depression, and anxiety. Due to many factors like lack of education or attitudes among medical professionals (MPs), receiving a diagnosis of either of these conditions can be a challenging and grueling journey for patients. An online survey was conducted and distributed over social media platforms to gain insight into HSD/hEDS patients' diagnostic journey and the disparities they experienced in receiving a diagnosis. A total of 310 responses were collected, and data analyses were conducted in three groups (total, HSD, and hEDS). Participants reported low levels of satisfaction with care, low levels of communication by their MPs, and diverse explanations on why they felt their care was affected. HSD and hEDS participants had similar answers to most, except differences were noted when asked if they felt their level of care was affected by their gender. Approximately the same number of HSD patients said their gender either did affect or did not affect their care. However, hEDS responses were skewed toward their gender did affect their level of care. Nonetheless, both HSD and hEDS felt they were treated as less intelligent by their MPs, felt they were treated with less respect by their MPs, and overall had a difficult time receiving a proper diagnosis of HSD or hEDS. All in all, the healthcare HSD and hEDS patients receive is poor due to a lack of knowledge, communication, and respect.

Thesis Completion Year


Thesis Completion Semester


Thesis Chair

Scheidell, Joy D.


College of Health Professions and Sciences

Thesis Discipline

Health Sciences



Access Status

Open Access

Length of Campus Access


Campus Location

Orlando (Main) Campus



Rights Statement

In Copyright