Patterns of and Experiences with Dysphagia in People with hypermobile Ehlers Danlos Syndrome (hEDS) with or Without Dysautonomia - A Qualitative Study.

Ehlers Danlos Syndromes (EDS) are hereditary connective tissue disorders. The purpose of this participatory action qualitative research study is to describe experiences of dysphagia in people with hypermobile EDS (hEDS). Ten participants (8 F, 1 M, and 1 nonbinary-assigned F at birth; ages 19-52 years) with hEDS completed the Eating Assessment Tool (EAT-10; Belafsky et al., 2008), Reflux Symptom Index (RSI; Belafsky et al., 2002), and semi-structured interviews. The interviews were audio-recorded, transcribed and verified. Phenomenological qualitative research methods were used to code (Atlas.ti Web) and develop themes. All participants affirmed dysphagia symptoms via the EAT-10 (M = 17.65; SD = 6.93; Range = 4-29) with 6/10 requiring a feeding tube at some point. Most participants also affirmed reflux symptoms on the RSI (M = 20.30; SD = 8.3; Range 7-36). Four preliminary themes related to dysphagia in people with hEDS were identified: (1) Swallowing discomfort is common, requiring cognitive and physical effort; (2) Gastrointestinal symptoms impact deglutition and often lead to a need for supplemental nutrition / hydration; (3) Dyspnea is common, and may intermittently impact respiratory-swallowing coordination; and (4) Dismissal of physiological symptoms as "anxiety" by at least one provider prior to acknowledgment of an underlying condition occurs frequently. Dysphagia is commonly reported by people with hEDS and appears to be related to underlying symptoms of hEDS and/or dysautonomia. Further research is needed to elucidate the impact and mechanisms of impairments associated with hEDS and dysautonomia across all phases of swallowing.