Article Symptom complaints and impact on functioning in youth with hypermobile Ehlers–Danlos syndrome Susan T Tran 1 , Anjana Jagpal 1 , Marissa L Koven 1 , Carolyn E Turek 1,2 , Julia S Golden 1 and Brad T Tinkle 3 Abstract Hypermobile Ehlers–Danlos syndrome (hEDS), a genetic connective tissue disorder, involves several body systems which makes symptom management and functioning difficult. The aim of this study was to understand pediatric hEDS patients’ symptoms and primary complaints. Additionally, we examined the cumulative impact of symptoms on physical and psychological functioning. Thirty- four youth with hEDS were recruited from a genetics clinic and reported the hardest thing about having hEDS, their pain, fatigue, physical symptoms, functional disability, anxiety, and depression. Physical symptoms (pain and fatigue) and limitations (keeping up with friends) were reported as the most difficult parts of having hEDS. A higher number of somatic symptoms was the strongest predictor of disability, anxiety, and depression. Physical symptoms are subjectively distressing and significantly related to impairments in physical and psychological functioning. Thus, addressing these varied symptoms in treatment may yield better functioning in youth with hEDS. Keywords Anxiety, depression, fatigue, functional disability, hypermobile Ehlers–Danlos syndrome, pain Patients living with hypermobile Ehlers–Danlos syndrome (hEDS) may experience a wide range of physical symptoms which may impact physical and psychological functioning, and shape appraisals of living with this chronic condition. HEDS (previously known as EDS type III) is the most common subtype of EDS, which is a group of heritable connective tissue disorders (Malfait 1 Department of Psychology, DePaul University, Chicago, IL, USA 2 Children’s Hospital of Orange County, Orange, CA, USA 3 Peyton Manning Children’s Hospital, Indianapolis, IN, USA Corresponding author: Susan T Tran, Department of Psychology, DePaul University, 2219 North Kenmore Avenue, Chicago, IL 60614, USA. Email: susan.tran@depaul.edu Journal of Child Health Care 1–14 ª The Author(s) 2019 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1367493519867174 journals.sagepub.com/home/chc