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Updated: Sep 14, 2025

Human Circadian Phenotyping and Diurnal Performance Testing in the Real World
Published on: April 7, 2020
Sleep Characteristics in Individuals with Ehlers-Danlos Syndrome
Caitlin Crews-Stowe1, Frank Tudini2, Min-Kyung Jung3
1Health and Human Performance Department, University of Tennessee at Chattanooga, Chattanooga, TN 37403, USA.
People with Ehlers-Danlos Syndromes (EDS) experience significant sleep disturbances, including short sleep duration and long sleep latency. Many rely on sleep aids, indicating a critical need to address sleep in EDS management.
Area of Science:
- Sleep Medicine
- Genetics
- Rheumatology
Background:
- Ehlers-Danlos Syndromes (EDS) significantly impact health, causing pain and disability.
- The specific effects of sleep disturbances in the EDS population are not well-documented.
Purpose of the Study:
- To characterize the sleep patterns and disturbances experienced by individuals with Ehlers-Danlos Syndromes.
Main Methods:
- An electronic survey was developed to collect data on sleep characteristics.
- The survey was distributed online through the Ehlers-Danlos Syndromes website.
Main Results:
- A high prevalence of sleep disturbance was observed, with 65.3% sleeping less than 8 hours and 26.2% less than 6 hours.
- Individuals sleeping less than 6 hours reported more poor mental and physical health days.
- Commonly reported issues include long sleep latency (67.5% > 30 min) and frequent use of sleep aids (41.4% use prescription medication).
Conclusions:
- Individuals with Ehlers-Danlos Syndromes exhibit poorer sleep duration, increased sleep latency, and higher usage of sleep aids compared to the general population.
- Sleep may be a crucial factor to consider in the comprehensive management of Ehlers-Danlos Syndromes.
- Further research is warranted to fully understand and address sleep issues in EDS.
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