Beyond connective tissues: Immune insights from a clinical survey on hypermobile Ehlers-Danlos syndrome (hEDS) 9153

Abstract Description Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are widely regarded as primary connective tissue disorders but are frequently associated with systemic comorbidities, particularly allergy and immunology-related issues. This study investigates the interplay between hEDS/HSD and immune-related complications through an online survey. An anonymous survey hosted on the REDCap platform targeted individuals diagnosed with hEDS or HSD, collecting data on symptoms, diagnoses, and patient experiences. Responses from 3,360 hEDS and 546 HSD participants were analyzed using Chi-squared tests. Immune-related conditions were significantly more prevalent in the hEDS group compared to HSD, including allergies (80.6% vs. 69.4%), asthma (42.1% vs. 29.9%), mast cell activation syndrome (29.9% vs. 12.1%), anaphylaxis (29.4% vs. 15.4%), chronic sinusitis (26.8% vs. 17.2%), chronic urticaria (14.7% vs. 4.8%), and cold urticaria (5.1% vs. 1.8%). All differences were statistically significant (p < 0.0001). Additionally, allergy symptoms ranked among the top three most severe factors by 14.4% of hEDS and 12.6% of HSD respondents. These findings highlight the high prevalence of immune-related conditions in this population and underscore the need for research into potential immune mechanisms underlying hEDS, as well as the development of treatment strategies to address the significant burden of allergy and immunological symptoms in affected individuals. Funding Sources Maltz Family Foundation Topic Categories Immediate Hypersensitivity, Asthma, and Allergic Responses (HYP)