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Impact of Hereditary Angioedema on Patients

Mother and daughter hugging.

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

HAE diagnostic delays and misdiagnoses

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A 2010 paper reported that patients saw an average of 4 different physicians before getting a diagnosis of HAE2

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A 2017 survey of 445 patients with HAE had an average delay in getting an accurate diagnosis of 8.4 years (SD: 10.6 years)3

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Know the signs of hereditary angioedema to help reduce the misdiagnosis of this unpredictable disease.

Impact of HAE

The burden of HAE is multifaceted. HAE not only impacts a patient's body, but also their psychological, social, and somatic functioning.1,2

  • Patients with HAE may develop increased anxiety and depression associated with the unpredictability, frequency, and severity of HAE attacks3
  • Patients with HAE may experience impairment of daily activities (work, education, and social)3
  • There may be economic costs3

According to a 2017 self-reported survey of 445 patients with HAE3:

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Approximately 9.2% of patients visited the emergency department or an urgent care facility for a mean of 5.2 visits over the past year3

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Approximately 13% of patients visited a hospital and stayed an average of 1 week (7.4 nights)3

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Approximately 14% of patients required intubation following a laryngeal attack3

The study was conducted by physicians and scientists from Massachusetts General Hospital, Research Triangle Park, and Takeda.3

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Manage HAE with a treatment plan which includes on-demand for every patient and consideration of long-term prophylactic medications to help prevent HAE attacks.4


  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. The burden of illness in patients with hereditary angioedema. Ann Allergy Asthma Immunol. 2013;111(5):329-336.
  3. 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.
  4. Busse PJ, Christiansen SC, Riedl MA, et al. US HAEA Medical Advisory Board 2020 guidelines for the management of hereditary angioedema. J Allergy Clin Immunol Pract. 2021;9(1):132-150. doi:10.1016/j.jaip.2020.08.046