schema: eds-research/corpus/v1
category:
  id: community-knowledge
  label: Community knowledge
  description: "Patterns that recur in patient forums and organizations: practical advice, self-management, and problems patients report before research has studied them."
  order: 60
records:
  - id: signal-subluxation-load
    kind: signal
    title: Subluxation, braces, taping, and joint-stabilization self-management
    summary: Much of the practical discussion in patient communities is about joints that partly slip out of place (subluxation) rather than fully dislocate. Members swap taping, bracing, and stabilizing techniques, often for subluxations no doctor has confirmed. Clinical literature treats subluxation as close to, but not itself, a diagnostic criterion; the community discussion is about day-to-day management rather than diagnosis.
    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: single-venue-pattern
        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”
    summary: Members treat finding a physical therapist as a search problem. They share directories and word-of-mouth referrals and look for therapists who avoid the generic exercise programs members consider harmful.
    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
    description: Patient communities keep lists of cautions about local anesthetics that wear off early, flares after surgery, and sensitivity to medications.
    summary: Patient communities keep long-running lists of cautions about local anesthetics that wear off early, flares after surgery, and reported sensitivity to medications, many of them predating clinical study. Surveys and a 2026 trial have since supported the anesthetic reports; the medication-sensitivity reports remain anecdotal.
    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
    description: Members of EDS patient communities share advice on which specialists diagnose EDS, which tests matter, and how to prepare for an appointment.
    summary: Members share advice on which specialists diagnose EDS, which tests matter, and how to prepare for an appointment, in response to diagnostic delays that often last years. This is peer advice, 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-9a67b455782a95159bd9]
        note: In the Global Registry survey, people with hEDS reported an average of 10.45 other diagnoses and 10.39 years to diagnosis.
    corroboration: convergent
    venues: [venue-reddit-ehlersdanlos, venue-inspire-eds-hsd]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [diagnosis, access]