schema: eds-research/corpus/v1
category:
  id: patient-experience
  label: Patient experience and diagnostic odyssey
  description: The measured human cost — diagnostic delay, dismissal, and the structured record of what getting diagnosed actually takes.
  order: 80
records:
  - id: px-diagnostic-odyssey-2021
    kind: finding
    title: The diagnostic odyssey is measured in years, not visits
    summary: The 2021 systematic review of the EDS diagnostic journey documents protracted time-to-diagnosis, serial misdiagnosis, and healthcare dismissal across patient populations. Delay is not an anecdote — it is a measured property of the system.
    date: "2021"
    date_precision: year
    subtypes: [all-eds]
    status: established
    criteria_era: era-independent
    evidence:
      - stratum: clinical
        tier: systematic-review
        source_ids: [source-fa671c0df94cd9c20ecb]
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-8d222b21a7423563aba4, source-de164233cddfefc4105a]
        note: "Cohort data: 10–12 year average delay (Australia) and 22-year median for hEDS/HSD (Germany)."
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
        note: Diagnostic-odyssey posts are a durable fixture across community venues.
    corroboration: convergent
    reviewed_at: "2026-09-16"
    tags: [diagnosis, delay]
  - id: px-trauma-informed-2025
    kind: finding
    title: Diagnosis itself can be traumatic — the 2025 phenomenological record
    summary: The 2025 BMJ phenomenological study (n=9, in-depth interviews) describes an "endless struggle" marked by uncertainty, dismissal, and medical gaslighting — and urges trauma-informed care at the diagnostic encounter itself. The psychiatric-label misdiagnosis burden is documented alongside it.
    date: "2025"
    date_precision: year
    subtypes: [heds, hsd]
    status: established
    criteria_era: international-2017
    evidence:
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-21337422dde3976b584c]
      - stratum: registry
        tier: registry-analysis
        source_ids: [source-d4a910b62f451448889e]
        note: Anxiety and depression were the most-common pre-EDS alternative diagnoses in the registry survey.
    corroboration: convergent
    reviewed_at: "2026-09-16"
    tags: [trauma-informed, gaslighting]
  - id: px-german-cohort-manifestations
    kind: finding
    title: What hEDS/HSD patients actually present with — the 2025 German cohort
    summary: "The 2025 German outpatient cohort (n=105, diagnosed 2021–2024) shows the real-world presentation profile: musculoskeletal pain, joint instability and subluxation as dominant features, alongside fatigue and the expected comorbidity load. A current-era complement to the criteria literature."
    date: "2025"
    date_precision: year
    subtypes: [heds, hsd]
    status: established
    criteria_era: international-2017
    evidence:
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-de164233cddfefc4105a]
    reviewed_at: "2026-09-16"
    tags: [manifestations, cohort]
  - id: px-fatigue-underrecognized
    kind: finding
    title: Fatigue is severe, common, and systematically underweighted
    summary: Fatigue is among the highest-burden symptoms in hEDS/HSD cohorts yet historically underweighted against joint and skin features. The 2017 multisystem criteria and subsequent cohort work restored it to the clinical picture.
    subtypes: [heds, hsd]
    status: probable
    criteria_era: international-2017
    evidence:
      - stratum: clinical
        tier: expert-review
        source_ids: [source-1ad3f0edd57e0fab1524]
      - stratum: clinical
        tier: cohort-study
        source_ids: [source-de164233cddfefc4105a]
    reviewed_at: "2026-09-16"
    tags: [fatigue]