Two studies presented at the 2025 American College of Allergy, Asthma and Immunology (ACAAI) Annual Scientific Meeting in Orlando examine the challenges faced by children and adolescents with hereditary angioedema (HAE), a rare disease that causes unpredictable swelling episodes.
Researchers conducted interviews and online discussions with 31 children aged 2–11, 19 adolescents aged 12–17, and 85 healthcare professionals. The findings indicate that HAE has a significant impact on the daily lives and emotional wellbeing of young patients and their caregivers. Adolescents reported feeling more affected by HAE than caregivers did for younger children. Participants noted disruptions to school attendance, sports, and social activities. Many children also experienced ongoing anxiety about future attacks even when symptom-free.
“While 16 of 23 children said they felt happy when symptom-free, nearly 40% said they still worried about future attacks,” said allergist Raffi Tachdjian, MD, MPH, ACAAI member and lead author of the study. “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.”
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 focused on emergency department (ED) experiences among young HAE patients. This research included insights from 19 adolescents, 31 caregivers, and over 100 healthcare professionals. About half of the adolescents and caregivers had visited an ED or hospital before age 12.
Some participants described positive experiences such as quick treatment; however, most reported challenges including delays in care, lack of medication availability, and staff unfamiliarity with HAE. These issues 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 studies suggest that managing hereditary angioedema in young people requires attention not only to medical needs but also mental health support for patients and families.
For additional information about allergic conditions or finding an allergist: https://allergyandasthmarelief.org/. Details about the ACAAI Annual Scientific Meeting are available at https://acaai.org/newsroom/.
The American College of Allergy, Asthma & Immunology is a professional organization representing over 6,000 specialists dedicated to patient care through education, advocacy, research collaboration since its founding in 1942.
