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Impact of Hereditary Angioedema on Patients

Mother and daughter hugging and smiling.

A diagnosis of hereditary angioedema (HAE) is very often delayed.1

HAE diagnostic delays and misdiagnoses2

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In a 2010 paper, patients saw an average of 4 different physicians before getting a diagnosis of HAE.3

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In a 2017 survey of 445 patients with HAE, people with HAE on average experienced a delay of 8.4 years in getting an accurate diagnosis.2

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Misdiagnoses may contribute to diagnostic delays and result in unnecessary treatments, potentially increasing the risk of death.4

HAE can impact a patient's life in a variety of ways

Burden of illness may include2,5:

  • Anxiety and depression
  • Dissatisfaction with care (perception of effectiveness, tolerability, and convenience of treatment)
  • Impairment of daily activities (work, education, and social)
  • Economic costs
  • Decreased health-related quality of life (physical, psychological, social, and somatic functioning and well-being)
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According to a 2017 self-reported survey of 445 patients with HAE, anxiety and depression are common comorbidities, affecting approximately 35% and 21% of patients, respectively. The severity of anxiety and depression worsened with more frequent HAE attacks.2 It's important to refer to a mental health specialist to help cope with anxiety and depression.

In the same survey, over the course of 1 year2:

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Approximately 13% of patients visited a hospital and stayed an average of 1 week (7.4 nights)

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Approximately 14% of patients required intubation following a laryngeal attack

The study was conducted by physicians and scientists from Massachusetts General Hospital, Research Triangle Park, and Shire.


  1. Banerji A, Li Y, Busse P, et al. Hereditary angioedema from the patient's perspective: a follow-up patient survey. Allergy Asthma Proc. 2018;39(3):212-223. doi:10.2500/aap.2018.39.4123
  2. Banerji A, Davis KH, Brown TM, et al. Patient-reported burden of hereditary angioedema: findings from a patient survey in the United States. Ann Allergy Asthma Immunol. 2020;124(6):600-607. doi:10.1016/j.anai.2020.02.018
  3. Lunn ML, Santos CB, Craig TJ. Is there a need for clinical guidelines in the United States for the diagnosis of hereditary angioedema and the screening of family members of affected patients? Ann Allergy Asthma Immunol. 2010;104(3):211-214.
  4. Longhurst HJ, Bork K. Hereditary angioedema: an update on causes, manifestations and treatment. Br J Hosp Med (Lond). 2019;80(7):391-398. doi:10.12968/hmed.2019.80.7.391
  5. Banerji A. The burden of illness in patients with hereditary angioedema. Ann Allergy Asthma Immunol. 2013;111(5):329-336.