Adult Swallowing: Normal and Disordered

5506V - Patterns of and Experiences With Dysphagia in People with Hypermobile Ehlers Danlos Syndrome (hEDS)

ON-DEMAND

Format: Technical Research (Virtual)

Audience: Researchers, Related Professionals

Keywords: Ehlers Danlos Syndrome, Dysphagia, Swallowing, Dysautonomia, Qualitative

Presenting Author(s)

Karyssa Stonick

Portland State University Speech and Hearing Sciences Department

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Author Only (Not Presenting)(s)

Deanna Britton

Portland State University/Oregon Health and Science University
Emily Goble

Portland State University Speech and Hearing Sciences Department
Alison Wong

Portland State University Speech and Hearing Sciences Department
Alena Guggenheim

Oregon Health & Science University
Donna Graville

Oregon Health and Science University

Ehlers Danlos Syndromes (EDS) are collagen-based hereditary connective tissue disorders characterized by decreased tissue integrity. Historically, the musculoskeletal and dermatological manifestations have been emphasized. However, EDS is associated with conditions affecting nearly all body systems, including swallowing. Our long-term hypothesis is that hEDS’s impact on swallowing is multifaceted and related to both structural and physiological impairments. The purpose of this study is to identify patterns and actionable factors which contribute to dysphagia in people with hEDS with or without co-morbid dysautonomia. A phenomenological qualitative approach, including questionnaires and a semi-structured interview will be used. From our analysis of the experiences, signs, symptoms, and factors impacting swallowing in people with EDS, themes and actionable factors will be derived and discussed.

Learning Objectives:

Demonstrate a basic understanding of hypermobile Ehlers Danlos Syndrome.
Summarize the basic literature describing the potential impacts of hypermobile Ehlers Danlos Syndrome.
Describe the potential implications for assessment and intervention for people with hypermobile Ehlers Danlos Syndrome based on the patient experiences described.