Quality-of-Life Issues with HAE

The bottom line for patients with HAE is that their quality of life severely diminishes. Their suffering goes beyond the physical: most feel a loss of control due to frequent, unpredictable attacks and the fear that they may face a life-threatening HAE attack. Many patients suffer from depression, fear, and anxiety, 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 quality of life.

Helping your patient to achieve a quality of life across the patient care continuum

• Recognize the provision and 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
• Ensure dissemination of information to both healthcare professionals and patients
• Provide an understanding of potential attack triggers and help patients identify and implement ways to avoid them
• Network and share information among all specialties treating C1-INH deficient patients so that there is a uniform effective approach to the key issues of C1-INH deficiency management

For more information about diagnosis and treatment of HAE see: