Voice Disorders in Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a connective tissue disorder. Case reports and small-scale survey studies report varied laryngeal deficits in patients with EDS, including arytenoid prolapse and vocal fold hypermobility. However, data on specific voice-related symptomology as well as social and functional voice-related limitations in EDS are lacking. Our study delineated specific voice symptomology of EDS and the impact of dysphonia on quality of life.

Participants with a diagnosis of EDS, between the ages of 18 and 89 years, completed an online questionnaire that collected demographics, frequency of voice problems, social voice-related impact, and voice treatment services sought.

Participants with EDS (n = 478, average age: 41.56 + 13.17 years, 423 women, 26 men, 29 identifying as other) completed the survey. Approximately 86.9% (n = 380) reported history of voice problems, with a higher proportion of females (83% women, 61% men, 41% identifying as other, p < .001), but no differences in age (p = .765) or education level (p = .810) between those reporting voice problems versus not. Acute voice problems were more common (63.9%, p < .001). Of the 400/478 participants with EDS who reported a current voice problem, 91%-97% had social limitations or absences from school or work, with only 20.25% seeking speech-language pathology services (p < .001). Participants seeking speech-language pathology services for their current voice problem reported frequent hoarseness and throat clearing (p = .003) compared to those not seen by a speech-language pathologist.

Voice problems were prevalent among participants with EDS in our survey cohort. Participants reported specific voice symptomology and social and work limitations. These data lay the groundwork for the development of early screening procedures and improved voice treatment for this population.

https://doi.org/10.23641/asha.29550065.