schema: eds-research/corpus/v1
category:
  id: community-knowledge
  label: Community knowledge
  description: What patient venues carry that the formal literature still lacks — recurring self-reported signals, practical knowledge, and lived patterns.
  order: 60
records:
  - id: signal-subluxation-load
    kind: signal
    title: Subluxation, braces, taping, and joint-stabilization self-management
    summary: Across community venues the dominant practical corpus concerns joints that slip rather than dislocate — users trade taping, bracing, and stabilization techniques for joints that partially sublux without medical confirmation. The clinical literature acknowledges subluxation as a criterion-adjacent feature; the community knowledge layer is operational rather than diagnostic.
    subtypes: [heds, hsd, ceds]
    status: community-signal
    criteria_era: era-independent
    evidence:
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
      - stratum: community
        tier: patient-org-synthesis
        source_ids: [source-2fd8a13a36c4a8bd2b01]
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [subluxation, self-management]
  - id: signal-pt-that-knows-eds
    kind: signal
    title: Finding "a PT who knows EDS" is itself a researched problem
    summary: Community venues treat physical-therapy provider selection as a navigational problem — directories, word-of-mouth referrals, and filters for providers who do not prescribe harmful generic exercise. The "find an EDS-literate PT" pattern is a structural access problem, not a treatment dispute.
    subtypes: [heds, hsd]
    status: community-signal
    criteria_era: era-independent
    evidence:
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [physical-therapy, access]
  - id: signal-meds-anesthesia-cautions
    kind: signal
    title: Medication, dental, and procedural caution knowledge
    summary: Community venues carry a mature caution corpus — local-anesthetic duration problems, post-operative flares, and medication-sensitivity reports that predate the clinical confirmation. This layer is now partly validated (the lidocaine arc) and partly still anecdotal (medication sensitivity reports).
    subtypes: [all-eds]
    status: community-signal
    criteria_era: era-independent
    evidence:
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [anesthesia, dental, medication]
  - id: signal-diagnosis-navigation
    kind: signal
    title: Diagnosis navigation and specialist-finding strategies
    summary: Community venues maintain informal routing — which specialists diagnose, which tests matter, how to prepare a diagnostic case. This is the community's response to the documented multi-year diagnostic delay, not a clinical pathway.
    subtypes: [heds, hsd]
    status: community-signal
    criteria_era: international-2017
    evidence:
      - stratum: community
        tier: cross-venue-pattern
        source_ids: [source-ec36295ad04f34148c63, source-641ce29242a70e8a5f01]
      - stratum: registry
        tier: registry-analysis
        source_ids: [source-d4a910b62f451448889e]
        note: Registry data on alternative-diagnosis load explains why the navigation corpus exists.
    corroboration: convergent
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [diagnosis, access]