Self-reported Demographics of 154 Hypermobile Ehlers-Danlos Syndrome Patients

Demographic data for patients with hypermobile Ehlers-Danlos syndrome have not been well established. Hypermobile Ehlers-Danlos syndrome patients often present with a constellation of symptoms; it is important to update clinical criteria for diagnosis and provide a framework for common comorbidities. The primary objective of this study was to identify the prevalence of comorbidities in hypermobile Ehlers-Danlos syndrome patients to allow clinicians to better identify patients and their most common symptoms. The goal is to use this information to augment diagnostic and clinical demographic data to more accurately represent hypermobile Ehlers-Danlos syndrome patients. This retrospective chart review utilized patient intake forms from 154 patients diagnosed with hypermobile Ehlers-Danlos syndrome in a clinic. Patient intake forms included responses to questions about the presence of various current and previous conditions. Our study revealed numerous comorbidities with increased prevalence that differed from the current diagnostic criteria including postural orthostatic tachycardia syndrome, mast cell activation syndrome, anxiety, depression, temporomandibular joint syndrome, headaches, and gastroesophageal reflux disease. These findings will help inform clinicians of prevalent comorbidities among hypermobile Ehlers-Danlos syndrome patients and encourage further evaluation for screening and diagnosis. Hypermobile Ehlers-Danlos syndrome patients presented with a wide range of comorbidities not listed on current clinical criteria. Future studies are warranted across diverse and larger patient populations and beyond self-reported data.