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Living with Hereditary Angioedema

Woman at work smiling at the camera.

Hereditary angioedema (HAE) not only impacts a patient’s body, but also their psychological, social, and somatic functioning.1,2

In a 2017 survey of 445 patients, a higher frequency of HAE attacks was also associated with lower energy levels and greater difficulty performing basic daily activities over the course of a week1:

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34% of patients reported that their physical health or emotional problems interfered with their ability to participate in social activities at least some of the time1

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Patients reported that HAE-related symptoms affected their work productivity for a mean (SD) of 2.3 (2.6) hours and their ability to perform non-work-related activities for a mean (SD) of 3.2 (3.0) hours over the previous 7 days1

A higher frequency of HAE attacks also impacts patients'1 careers over time:

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In a 2007-2008 study with 457 patients, 69% of patients reported that symptoms prevented them from apply to certain types of jobs1

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Nearly 80% of 74 patients in a 2011 study reported missing work during severe attacks1

These, along with other psychological impacts, can lead to a burden that goes far beyond the physical impacts of HAE. Patients may also struggle, or have struggled in the past, with finding a healthcare provider who understands HAE and may carry the burden of needing to educate healthcare providers, particularly when they are in need of emergency care.3,4

Chaeli, patient living with HAE.

“After that first swell…my attitude toward HAE changed. I was paranoid and worried that HAE would strike. My first swell was followed by a cascade of swells in my face and stomach over the following months, impacting my performance in school and the relationships I had built while away at college.”

Chaeli, living with HAE

Katie, patient living with HAE.

“Because HAE is a rare disease, most doctors don’t see a lot of patients with it, so they may not realize how difficult it is to experience an attack, and how much of a burden HAE can be.”

Katie, living with HAE

Smiling child sitting on his father's shoulders.

HAE & families

HAE can affect both adults and children, with symptoms generally worsening after puberty.3

Regardless of the frequency and severity of their own attacks, many patients worry or experience anxiety around passing HAE down to their children.1,3

Obstetricians and primary care physicians may need to be equipped to have discussions surrounding family planning and concerns about passing HAE to offspring. Additionally, many women may experience HAE attacks triggered by sexual intercourse, menstruation, ovulation, pregnancy, menopause, or estrogen-containing medicines.1,3,5

aBased on a 2017 quality-of-life survey of 445 patients.3


  1. 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.
  2. Banerji A. The burden of illness in patients with hereditary angioedema. Ann Allergy Asthma Immunol. 2013;111(5):329-336.
  3. 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
  4. 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
  5. Craig T, Riedl M, Dykewicz MS, et al. When is prophylaxis for hereditary angioedema necessary? Ann Allergy Asthma Immunol. 2009;102(5):366-372. doi:10.1016/S1081-1206(10)60506-6