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Voice Disorders in Ehlers-Danlos Syndrome
Anumitha Venkatraman1, Alexandra Schenck2, Susan L Thibeault1
1Department of Surgery, University of Wisconsin-Madison.
American Journal of Speech-Language Pathology
|July 25, 2025
Summary
Voice problems are common in Ehlers-Danlos syndrome (EDS), affecting quality of life and causing social limitations. Early screening and improved voice treatments are needed for this population.
Area of Science:
- Medical research
- Speech and hearing science
- Genetics
Background:
- Ehlers-Danlos syndrome (EDS) is a connective tissue disorder.
- Previous studies suggest laryngeal deficits in EDS patients, but voice-specific symptoms and quality of life impacts are not well-documented.
Purpose of the Study:
- To identify specific voice-related symptoms in individuals with EDS.
- To assess the impact of dysphonia on social and functional aspects of life for EDS patients.
Main Methods:
- An online questionnaire was administered to 478 adults diagnosed with EDS.
- Data collected included demographics, voice problem history, social impact of voice issues, and seeking of voice treatment services.
Main Results:
- 86.9% of participants reported a history of voice problems, more prevalent in females.
- 91%-97% experienced social or work limitations due to voice issues.
- Only 20.25% sought speech-language pathology services, despite frequent hoarseness and throat clearing.
Conclusions:
- Voice problems are highly prevalent in the EDS population, leading to significant functional limitations.
- The findings support the need for developing early screening tools for voice disorders in EDS.
- Improved voice treatment strategies tailored for EDS patients are warranted.
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