Ehlers-Danlos Syndrome (EDS) focusing on oral symptoms: a questionnaire study

Orthod Craniofac Res. 2004 Aug;7(3):178-85. doi: 10.1111/j.1601-6343.2004.00288.x.


Objectives: To study the prevalence of oral problems reported among a large group of adults with Ehlers-Danlos Syndrome (EDS). Furthermore, to compare proportions of disorders and general psychological well-being with those in a cohort of randomized population-based controls.

Design: A questionnaire study.

Setting and sample population: A total of 265 persons with EDS (response rate 77%) and 750 controls (response rate 63%) in a population-based cohort. Sixty persons were excluded from the EDS group (support members, children, undiagnosed EDS) leaving a final study group of 144 adults. The final control group consisted of 331 persons since many had sent back unanswered questionnaires.

Experimental variables: Questions concerning general and oral symptoms, VAS scales for masticatory muscle pain ratings and General Health Questionnaire (GHQ12) questions were included.

Outcome measure: Proportions of affirmative answers in EDS group and controls were compared. Mean values for ratings on VAS scales. Proportions of GHQ12 scores with a threshold score of four or more.

Results: The proportions of affirmative answers for persons with EDS concerning general health problems, oral problems and masticatory muscle symptoms were significantly higher compared with controls. In the EDS group those who had daily pain in the masticatory muscles had significantly higher mean values on the VAS scales compared with those who had pain a few days per month. A GHQ12 score of four or more was significantly more common in the EDS group than in the controls, suggesting that a decline in psychological well-being was also more common in this group.

Conclusion: It is important that dental practitioners should be aware of the oral problems associated with EDS and the impact the disease has on quality of life.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Attitude to Health
  • Cohort Studies
  • Ehlers-Danlos Syndrome / complications*
  • Ehlers-Danlos Syndrome / psychology
  • Facial Pain / etiology
  • Female
  • Health Status
  • Humans
  • Male
  • Masticatory Muscles / pathology
  • Middle Aged
  • Mouth Diseases / etiology*
  • Mouth Diseases / psychology
  • Pain Measurement
  • Population Surveillance
  • Quality of Life