Presentation Type

Oral Presentation

Start Date

4-5-2022 9:00 AM

End Date

4-5-2022 11:00 AM

Subjects

Ehlers Danlos Syndrome; dysphagia; dysautonomia; swallowing

Advisor

Dr. Deanna Britton

Student Level

Undergraduate

Abstract

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 symptoms and conditions affecting nearly all body systems, including swallowing (dysphagia). A Cohort Discovery analysis at Oregon Health & Science University (OHSU) revealed that 14.9% ± 0.3% of patients with an ICD-10 diagnosis of EDS also have an ICD-10 diagnosis of dysphagia in their medical record. Despite only one article in the current literature, the prevalence of dysphagia in EDS is not insignificant and warrants further investigation. 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 comorbid dysautonomia. We will use a phenomenological qualitative approach, including questionnaires and a semi-structured interview. The interviews will be audio/visual recorded, orthographically transcribed, and then analyzed using Atlas.ti 84 Web. Based on analysis of the experiences, signs, symptoms, and factors impacting swallowing in people with EDS, themes and actionable factors will be derived and discussed.

Persistent Identifier

https://archives.pdx.edu/ds/psu/37491

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May 4th, 9:00 AM May 4th, 11:00 AM

Patterns of and Experiences with Dysphagia in People with Hypermobile Ehlers Danlos Syndrome (hEDS) With or Without Dysautonomia

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 symptoms and conditions affecting nearly all body systems, including swallowing (dysphagia). A Cohort Discovery analysis at Oregon Health & Science University (OHSU) revealed that 14.9% ± 0.3% of patients with an ICD-10 diagnosis of EDS also have an ICD-10 diagnosis of dysphagia in their medical record. Despite only one article in the current literature, the prevalence of dysphagia in EDS is not insignificant and warrants further investigation. 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 comorbid dysautonomia. We will use a phenomenological qualitative approach, including questionnaires and a semi-structured interview. The interviews will be audio/visual recorded, orthographically transcribed, and then analyzed using Atlas.ti 84 Web. Based on analysis of the experiences, signs, symptoms, and factors impacting swallowing in people with EDS, themes and actionable factors will be derived and discussed.