ArticlePloS one2024
An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia.
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Painful subjects: the sociogenic processing of pain in individuals with Ehlers-Danlos syndromes.SSM. Mental health · 2026Article
- Affect Regulation Capabilities in Hypermobility Ehlers Danlos Syndrome: Exploring the Associations with Pain Perception and Psychophysical Health.Brain sciences · 2025Article
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Authors and funding
2 authors.
Funding
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Abstract
introductionEhlers-Danlos syndromes (EDS) is an umbrella term for a group of hereditary connective tissue disorders usually featuring hyperextensible skin, easy bruising, poor healing, and joint hypermobility. According to international Ehlers-Danlos support groups, the average time to diagnosis of this rare genetic condition is 10-12 years. Consequently, the journey to diagnosis can potentially be traumatic. This pilot study aims to explore female patients' journey to a diagnosis of EDS while living in Australia. MATERIALS AND
methodsOver six weeks, from January to February 2023, a survey was distributed on EDS social media platforms including Facebook and LinkedIn. Ethical approval was obtained through the Ulster University Institute of Nursing and Health Research Ethics Filter Committee (FCNUR). Thematic and statistical analysis of the anonymous data was completed during March 2023.
results152 women completed the survey. More than half of the respondents first noticed symptoms of EDS more than 15 years prior to diagnosis and more than three quarters of respondents received other diagnoses prior to their EDS diagnosis. Most respondents saw their general practitioner, a physiotherapist and/or a rheumatologist prior to being correctly diagnosed with the condition. While some respondents had positive experiences with these health professionals, many felt that they were not listened to and, after doing their own research, had to educate their health professional/s about EDS.
conclusionThis pilot survey demonstrated that the journey to diagnosis of EDS for women in Australia is frequently long and traumatic. Participants indicated that more EDS education and training is needed for health professionals, especially GPs, to improve the diagnostic process. IMPLICATIONS FOR PRACTICE: Participants called for their self-reported symptoms to be listened to by health professionals and to be met with empathy and an open mind instead of being dismissed. Additional education and training to health professionals about connective tissue disorders including EDS may aid earlier diagnosis in Australia.
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