Diagnosing EDS and HSD often takes years
A 2021 review of 13 qualitative studies of adults with hEDS or HSD found diagnosis delayed by the symptoms themselves and the lack of a confirmatory test, by patients seeing many providers and receiving many diagnoses, by limited clinician knowledge, and by fragmented health systems. Surveys put numbers on the delay. At one German EDS clinic, the median time to diagnosis was 23.0 years for hEDS or HSD and 14.5 years for classical and classical-like EDS. In an Australian survey of 152 women with EDS, more than half had first noticed symptoms more than 15 years before diagnosis.
| EDS types | all EDS types |
|---|---|
| Date | 2021 |
| Diagnostic criteria | Applies to all eras |
| Last checked | 2026-09-16 |
Evidence
Australia, 152 women with EDS: more than half first noticed symptoms over 15 years before diagnosis. Germany, 99 patients at one clinic: median time to diagnosis 23.0 years for hEDS/HSD, 14.5 years for classical and classical-like EDS (the paper's table; its abstract calls these means).
Long searches for a diagnosis come up repeatedly in these forums.