ArticleOrphanet journal of rare diseases2026
Hereditary angioedema and post traumatic stress disorder: a reciprocal relationship?
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundHereditary angioedema (HAE) patients endure repeated unpredictable trauma associated with attacks of disfiguring swelling, severe abdominal pain, risk of asphyxiation or experiences with loss of a loved one with HAE. Our study investigated the prevalence of presumptive post-traumatic stress disorder (PTSD) for HAE due to C1 inhibitor deficiency (HAE-C1INH).
resultsParticipants ≥ 18 with HAE-C1INH were recruited from the US HAE Association: Cohort 1, self-referred; Cohort 2, randomized from the HAEA membership. Participants completed 8 on-line questionnaires: (1) HAE survey; (2) SF-36; (3) Childhood Trauma Questionnaire (CTQ); (4) Beck Depression Inventory-II (BDI-II); (5) Life Events Checklist form for HAE; (6) PTSD checklist-civilian version (PCL-C); (7) Peritraumatic Dissociative Experiences Questionnaire (PDEQ) and (8) Peritraumatic Distress Inventory (PDI). The prevalence of presumptive PTSD based on the PLC-C outcomes was between 20 and 25% in HAE-C1INH participants (n = 77). Significant score correlations were found between: PLC-C and BDI-II (p < 0.0001, R
conclusionOur study identified a high prevalence of presumptive PTSD among HAE-C1INH participants. Diagnosis was correlated with high rates of depression and reduced SF-36 mental domain performance. The interrelationship between PTSD and HAE may represent reciprocal risk factors enhancing disease severity.
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