HAE in Women and Adolescents

These patients often bear an even greater share of the pain, disruption, and distress of living with HAE.

Women and HAE-C1-INH

The burden of HAE is higher in women, particularly those of childbearing age.¹

Women are often more affected by HAE-C1-INH because estrogen can increase bradykinin activity. Puberty, menstruation, pregnancy, postpartum changes, and menopause may all affect disease activity.^1,2

Key clinical considerations include:

Contraception

Birth control pills contain estrogen, which can trigger attacks and are generally to be avoided. Progestin-only options are preferred.¹

Pregnancy

Attack patterns may change during pregnancy and postpartum. Treatment plans should be reviewed before conception, including access to therapies appropriate during pregnancy and breastfeeding.^1-3

Adolescent onset

Symptoms may first appear or worsen during puberty as estrogen levels rise.^4-6

Menopause

Hormonal changes during perimenopause may affect attack frequency. Hormone replacement therapy should be monitored carefully.^1-3

Adolescents and HAE-C1-INH

Attacks can affect school, social life, and independence during critical developmental years.⁵

HAE-C1-INH often begins in childhood or adolescence, with attacks frequently worsening during and after puberty, especially in girls.^1,4-6

While adolescents experience the same physical symptoms as adults, the impact on daily life can be significant, including⁵:

Missed school and academic disruption
Social withdrawal during visible swelling episodes
Anxiety about appearing different from peers
Bullying or teasing related to visible swelling
Missing out on typical childhood events like birthdays and sleepovers

Treatment adherence can also be challenging. Injectable therapies may be difficult to manage independently at school, during sports, or while traveling. Convenience, discretion, and reliable access to treatment may directly affect whether adolescents treat attacks early or consistently.^5,7

Care for adolescent patients should include not only attack management, but also assessment of social functioning, academic impact, and barriers to treatment access.^5,8

C1-INH, C1-inhibitor; HAE, hereditary angioedema; HAE-C1-INH, hereditary angioedema due to C1-INH deficiency.

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REFERENCES

1. Hsu FI, Lumry W, Riedl M, Tachdjian R. Considerations in the management of hereditary angioedema due to C1-INH deficiency in women of childbearing age. Allergy Asthma Clin Immunol. 2022;18(1)64. doi:10.1186/s13223-022-00689-9 2. Gülbahar O. Angioedema without wheals: a clinical update. Balkan Med J. 2021;38(2):73-81. doi:10.5152/balkanmedj.2021.20060 3. Zuraw BL, Bernstein JA, Lang DM, et al. A focused parameter update: hereditary angioedema, acquired C1 inhibitor deficiency, and angiotensin-converting enzyme inhibitor-associated angioedema. J Allergy Clin Immunol. 2013;131(6)1491-1493. doi:10.1016/j.jaci.2013.03.034 4. Zuraw BL. The pathophysiology of hereditary angioedema. World Allergy Organ J. 2010;3(9 Suppl):S25-S28. 5. Broderick L, Foster A, Waldman LT, Bordone L, Yarlas A. The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience. Orphanet J Rare Dis. 2025;20(1):16. doi:10.1186/s13023-025-03539-0 6. Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema—the 2021 revision and update. Allergy. 2022;77(7):1961-1990. 7. Soteres DF, Grimes F. Patient and caregiver perspectives on transitioning to oral prophylaxis in the emerging hereditary angioedema treatment landscape. Clin Case Rep. 2021;9(11):e05086. doi:10.1002/ccr3.5086 8. Vázquez DO, Giavina-Bianchi P, Josviack D, et al. The 2025 WAO guidelines for the classification, diagnosis, and treatment of hereditary angioedema, with consideration of worldwide disparities. World Allergy Organ J. 2026;19(5):101335. doi:10.1016/j.waojou.2026.101335