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MOSAIC: LIVING WITH HAE

Image composed of HAE treatment items and text bubbles and sticky notes that say, "Why was my renewal denied," "I feel anxious and sad," and "I have to find a job with less stress."

The Full Portrait Includes Mental, Logistical, and Professional Impacts​

A complete picture of life with HAE means more than managing attacks, it means managing a lifelong diagnosis. A recent survey found that 68% of people living with HAE ranked the need for lifetime treatment as a top concern.1*

The Constant Mental Weight

You may feel like HAE is always top of mind. In a survey, most people said they think about it weekly, and many think about it daily.1* Worrying about future attacks, unpredictability, and emotional stress can all be a part of life with HAE.2,3†‡ Unfortunately, stress itself has been identified as a trigger for attacks.4§

Sixty-one percent thought of HAE weekly1*

Fifty-one percent were anxious and frustrated after their last attack.1*

The Ongoing Coordination

A recent survey identified insurance delays and denials as a major source of frustration,5* leading to negative emotions.6||,7¶ In turn, respondents said these delays and denials led to more frequent attacks when they were left without access to treatment.6||

Ninety percent said insurance delays and denials caused anxiety.6||

Seventy percent said attacks were more frequent due to treatment gaps from these insurance delays.6||

The Impact on Your Career

HAE can have a real impact on your career. Some people have even turned down job opportunities to avoid stress that can trigger attacks.5* For many, continued access to preventive treatment is also a consideration when evaluating job opportunities.5* If HAE has shaped your career choices, you are not alone.4§

28%.

Twenty-eight percent turned down a job to avoid stress.5*

69%.

Sixty-nine percent have had career choices limited by HAE.4§

2025 survey of 100 adults living with HAE.

2011 survey and interviews of 30 people age 12+ living with HAE.

2017 review of tools for patient-reported outcomes in HAE.

2007 survey of 457 people living with HAE.

2022 survey of 20 adults living with HAE.

2020 consensus meeting of 9 HAE experts from the US and Europe.

HOW IS HAE AFFECTING YOUR LIFE? DISCUSS YOUR BIGGEST STRESSORS WITH YOUR DOCTOR.

Attacks & Triggers

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References:

  1. Busse P, Wilson K, Farkas H, et al. Barriers to achieving normalization among people living with HAE on existing treatments. Presented at: American College of Allergy, Asthma and Immunology (ACAAI) 2025 Annual Scientific Meeting; November 6-10, 2025; Orlando, FL. ePoster R108.
  2. Bygum A, Aygören-Pürsün E, Beusterien K, et al. Burden of illness in hereditary angioedema: a conceptual model. Acta Derm Venereol. 2015;95(6):706-710. doi:10.2340/00015555-2014
  3. Bygum A, Busse P, Caballero T, Maurer M. Disease severity, activity, impact, and control and how to assess them in patients with hereditary angioedema. Front Med (Lausanne). 2017;4:212. doi:10.3389/fmed.2017.00212 
  4. Lumry WR, Castaldo AJ, Vernon MK, et al.. The humanistic burden of hereditary angioedema: impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc. 2010; 31:407-414. doi:10.2500/aap.2010.31.3394.
  5. Busse P, Wilson K, Farkas H, et al. Rethinking the management of hereditary angioedema. Allergy Asthma Proc. 2026;47(2):92-101. doi:10.2500/aap.2026.47.260004
  6. Arora NS, Nelson B, Carpenter L, et al. Consequences of insurance coverage delays and denials for patients with hereditary angioedema. J Allergy Clin Immunol Pract. 2023;11(8):2432-2438.e1. doi:10.1016/j.jaip.2023.03.006
  7. Bork K, Anderson JT, Caballero T, et al. Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report. Allergy Asthma Clin Immunol. 2021;17(1):40. doi:10.1186/s13223-021-00537-2 

This information is for educational purposes only and is not intended to constitute medical advice. For all healthcare decisions, talk with your healthcare team.

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