Studies reveal how hereditary angioedema disrupts the lives of children and families

Two new studies being presented at the 2025 American College of Allergy, Asthma and Immunology (ACAAI) Annual Scientific Meeting in Orlando shed light on how hereditary angioedema (HAE) – a rare, potentially life-threatening disease which causes unpredictable swelling – profoundly affects the daily lives, emotional wellbeing, and medical experiences of young patients and their caregivers.

Living with HAE can cause a serious emotional and social toll on young patients and their caregivers, according to findings from researchers who conducted interviews and online discussions with 31 children (ages 2–11), 19 adolescents (ages 12–17), and 85 healthcare professionals (HCPs).

The study found that adolescents perceived a greater overall impact of HAE on their lives than caregivers reported for younger children. Participants described HAE as disrupting school attendance, sports, and social activities. Even between attacks, many children expressed ongoing anxiety about when the next episode might occur.

While 16 of 23 children said they felt happy when symptom-free, nearly 40% said they still worried about future attacks. HCPs overwhelmingly reported that HAE causes emotional distress for both children and caregivers, often leading to anxiety, depression, and social isolation. Many also noted that the condition can contribute to academic struggles and missed developmental opportunities."

Raffi Tachdjian, MD, MPH, ACAAI member, allergist and lead author of the study

The researchers concluded that "HAE affects much more than physical health – it influences how children view themselves, interact with others, and engage in everyday life. Addressing the mental health and quality-of-life impacts is critical to comprehensive care.

A second study explored emergency department (ED) and hospital experiences among young patients with HAE, drawing insights from 19 adolescents, 31 caregivers, and more than 100 healthcare professionals. About half of adolescents and caregivers reported at least one ED or hospital visit before age 12.

While some described positive experiences – such as rapid treatment and symptom relief – most reported significant difficulties. Common challenges included delays in receiving care, lack of medication availability, and healthcare professionals unfamiliar with HAE. These factors contributed to fear and stress for both patients and families.

"Three out of four HCPs expressed concern about their patients receiving inadequate care and the possibility of long-term trauma resulting from negative hospital experiences," said allergist Patricia Stewart, MD, ACAAI member and lead author of the study. "Many noted that these encounters can lead to avoidance of medical care, even in emergencies."

The researchers concluded that emergency visits are often unavoidable for children with HAE, but that they can be frightening and traumatic. Improving awareness and preparedness among healthcare providers could make a critical difference for families of children with HAE.

Together, the two studies emphasize that managing hereditary angioedema in young patients requires more than medical intervention-it demands attention to mental health, family dynamics, and the quality of care experiences.

Abstract Title: Psychosocial Impact of Hereditary Angioedema on Young Patients and Their Caregivers

Presenter: Raffi Tachdjian, MD, MPH

Abstract Title: Emergency Department Experiences of Young Patients with Hereditary Angioedema and their Caregivers

Presenter:  Patricia Stewart, MD