Quality-of-Life Issues With HAE

For patients with hereditary angioedema (HAE), suffering goes beyond the physical. The unpredictable, painful and life-threatening attacks are very stressful for patients and their families, especially if they lack understanding of their condition.

Healthcare professionals involved with treating patients with HAE must clearly understand the issues associated with this disorder and the urgency of treatment so they can communicate with and provide support to patients and their families and friends. Comprehensive care begins with disease awareness education communicated by the physician to the patient, because the physician is the vital link between the patient and his or her quality of life.2

Help your patient achieve and maintain quality of life across the patient care continuum:

  • Recognize the key role of the specialist nurse in educating and supporting C1-INH-deficient patients
  • Foster effective communication among team members involved in the patient’s care 4
  • Ensure dissemination of information to both healthcare professionals and patients 1
  • Provide an understanding of potential attack triggers and help patients identify and implement ways to avoid them 1
  • Network and share information among all specialties treating C1-INH-deficient patients so that there is a uniform, effective approach to C1-INH deficiency management 4
  • Encourage patients to connect with the patient advocacy group the US Hereditary Angioedema Association (HAEA)


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Tools & resources for patients

AllAboutHAE.com offers numerous tools and other helpful resources for you and your patients who have HAE. Learn about tools & resources for patients

HAE family brochure

This helpful booklet provides HAE families with information to help them manage their disease and live full lives. Download the HAE family brochure