Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience

Abstract

Aim: Patients with Ehlers-Danlos Syndrome (EDS) are considered to have an increased risk for wound healing complications. Surgeons may therefore be hesitant to offer elective surgeries, including gender-affirming surgeries (GAS), to EDS patients. At our center, we frequently encountered patients presenting for GAS evaluation with the co-existing diagnosis of EDS. This study aims to establish the prevalence of EDS diagnosis in our GAS patients and compare their post-operative complications to patients without EDS diagnosis. Methods: This is a single-institution retrospective case-control study on all patients who underwent GAS from 2016-2020. Data include EDS diagnosis, demographics, operation, and complications (including minor wound healing issues). Results: Of 1363 patients presenting for GAS, 36 (2.6%) had EDS diagnoses and were matched with 108 control patients. Major complications requiring surgical intervention in the OR occurred in 6 patients (4.2%), (2.8% EDS vs. 5.4% controls; P = 0.63), while 8.3% of EDS and 14% of controls required minor interventions (P = 0.38). The rate of wound healing issues of any severity was 28% in EDS vs. 47% in control groups (P = 0.04). Conclusion: The prevalence of EDS diagnosis in our patient population is 132 times the highest reported prevalence in the general population. Wound healing issues and the need for additional post-operative interventions in the group with EDS diagnosis were not significantly different from the control group. Our findings suggest that patients with a diagnosis of EDS undergoing GAS have comparable outcomes to patients without EDS. Concerns for post-operative complications should not be a barrier to offering GAS to patients presenting with an EDS diagnosis.