Hereditary Angioedema (C1 Esterase Inhibitor–Associated Angioedema)
BASICS
DESCRIPTION
- C1 esterase inhibitor (C1-INH)–associated angioedema is characterized by recurrent episodes of nonpitting, asymmetric angioedema that most often occurs in three separate locations:
- Skin and mucosal tissues
- Laryngeal
- Gastrointestinal (GI) tract
- Types of C1-INH–associated angioedema:
Hereditary angioedema (HAE) Type I: C1-INH deficiency; type II: decreased C1-INH activity; HAE with normal C1-INH (formerly type III): normal C1-INH level and activity Acquired angioedema Occurs secondary to an underlying disease process - Although episodes are generally self-limited and resolve within a few days, they can be life-threatening due to laryngeal swelling.
- These acute episodes are not associated with urticaria or pruritus as they are bradykinin-mediated, not histamine-mediated.
- Prodromal symptoms include fatigue, GI symptoms, myalgias, and rash (erythema marginatum but not urticaria) that can occur 24 hours prior to an acute episode.
- Individuals can have variations in disease severity over the course of their lifetime that can have an adverse impact on quality of life.
EPIDEMIOLOGY
- Estimated prevalence is approximately 1 per 50,000 persons.
- Males and females are equally affected.
- No evidence of ethnic or racial differences
- Patients with hereditary forms of angioedema can present as children or young adults (most common in 8- to 12-year-olds), and symptoms frequently worsen in puberty.
- Those with acquired forms of C1-INH deficiency generally present later in life (>40 years).
RISK FACTORS
Genetics
- HAE is inherited in an autosomal dominant pattern; as such, family history is typically positive in these patients.
- Up to 25% of cases arise from de novo mutations.
- >400 pathogenic variants have been identified in the gene for C1-INH (SERPING1) located on chromosome 11 resulting in the following:
- Type I HAE is associated with C1-INH deficiency and accounts for approximately 85% of cases of HAE.
- Type II HAE is associated with decreased CI-INH activity in the setting of normal levels and accounts for approximately 15% of cases of HAE.
- HAE with normal C1-INH (formerly type III HAE) is associated with normal C1-INH activity and plasma concentrations.
- Mutations in factor XII, angiopoietin-1, plasminogen, and kininogen-1 have been identified in some families
- However, the underlying molecular defect has not been identified in the majority of these patients.
- Disease severity can differ significantly between family members, and factors determining severity are currently not well understood.
- Acquired
- Approximately 6–10% of C1-INH associated angioedema cases are acquired later in life.
- C1-INH deficiency can develop in association with underlying disease:
- Lymphoproliferative disorders
- Malignancy
- Monoclonal gammopathy of undetermined significance
- Autoimmune disease
- The mechanism of C1-INH deficiency is thought to be related to increased catabolism of C1-INH or the presence of autoantibodies leading to inactivation.
- Triggers
- A variety of triggers have been reported for acute episodes of C1-INH associated angioedema:
- Emotional stressors (most common)
- Physical triggers including mild local trauma such as dental procedures
- Infections such as upper respiratory infections or Helicobacter pylori in the GI tract
- Medications containing estrogen (oral contraceptives and hormone replacement), tamoxifen, and angiotensin-converting enzyme inhibitors (ACE-Is) that are contraindicated in patients with HAE
- Hormonal changes in women (perimenstrual, puberty, or pregnancy)
- A variety of triggers have been reported for acute episodes of C1-INH associated angioedema:
PATHOPHYSIOLOGY
- C1-INH is a serine protease inhibitor that serves to inhibit various steps in the classical and lectin complement pathways, intrinsic coagulation cascade, and fibrinolytic and kinin-generating pathways.
- Swelling associated with angioedema is related to the function of C1-INH in the kinin-generating pathway where it serves to inhibit active factor XII and kallikrein.
- Thus, when C1-INH activity is absent, overactivation of factor XII and kallikrein leads to cleavage of high molecular weight kininogen that results in the release of bradykinin.
- Bradykinin subsequently leads to enhanced vascular permeability resulting in swelling.
- In HAE with normal C1-INH (formerly type III HAE), C1-INH is normal, and generation of bradykinin occurs through alternate mechanisms that are not well understood.
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Citation
Cabana, Michael D., editor. "Hereditary Angioedema (C1 Esterase Inhibitor–Associated Angioedema)." 5-Minute Pediatric Consult, 9th ed., Wolters Kluwer, 2025. Pediatrics Central, peds.unboundmedicine.com/pedscentral/view/5-Minute-Pediatric-Consult/617218/all/Hereditary_Angioedema__C1_Esterase_Inhibitor_Associated_Angioedema_.
Hereditary Angioedema (C1 Esterase Inhibitor–Associated Angioedema). In: Cabana MDM, ed. 5-Minute Pediatric Consult. Wolters Kluwer; 2025. https://peds.unboundmedicine.com/pedscentral/view/5-Minute-Pediatric-Consult/617218/all/Hereditary_Angioedema__C1_Esterase_Inhibitor_Associated_Angioedema_. Accessed June 10, 2026.
Hereditary Angioedema (C1 Esterase Inhibitor–Associated Angioedema). (2025). In Cabana, M. D. (Ed.), 5-Minute Pediatric Consult (9th ed.). Wolters Kluwer. https://peds.unboundmedicine.com/pedscentral/view/5-Minute-Pediatric-Consult/617218/all/Hereditary_Angioedema__C1_Esterase_Inhibitor_Associated_Angioedema_
Hereditary Angioedema (C1 Esterase Inhibitor–Associated Angioedema) [Internet]. In: Cabana MDM, editors. 5-Minute Pediatric Consult. Wolters Kluwer; 2025. [cited 2026 June 10]. Available from: https://peds.unboundmedicine.com/pedscentral/view/5-Minute-Pediatric-Consult/617218/all/Hereditary_Angioedema__C1_Esterase_Inhibitor_Associated_Angioedema_.
* Article titles in AMA citation format should be in sentence-case
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BT - 5-Minute Pediatric Consult
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5-Minute Pediatric Consult

