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Living with Hereditary Angioedema

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Hereditary angioedema (HAE) attacks can be painful, disfiguring, and disabling, causing patients to miss out on work, school, or daily activities during an attack.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 week3:

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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 time3

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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 days3

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.4,5

Child sitting on his father's shoulders, smiling.

HAE & families

HAE can affect both adults and children, with symptoms generally worsening after puberty.4

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

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.3,4,6

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

References:

  1. Lumry WR, Castaldo AJ, Vernon MK, Blaustein MB, Wilson DA, Horn PT. The humanistic burden of hereditary angioedema: impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc. 2010;31(5):407-414. doi:10.2500/aap.2010.31.3394
  2. 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
  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. doi:10.1016/j.anai.2020.02.018
  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
  5. 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
  6. 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