HAE Attacks May Begin as Early as 2 Years Old, With Daniel Soteres, MD, PhD

At the 2025 American College of Allergy, Asthma, & Immunolog (ACAAI) Annual Scientific Meeting, Daniel Soteres, MD, PhD, from the University of Colorado Health Sciences Center, presented new data on the attack burden affecting children aged 2 – 11 years with hereditary angioedema (HAE).

“The burden of these attacks on children has previously been considered more of [an issue beginning at] the onset of puberty, you know, 11, 12, 14, 15 years old,” Soteres told HCPLive during the meeting. “It turns out when you talk with healthcare providers, the caregivers, and the adolescents who are helping control and manage this disease and understand this disease, that the attacks actually start a lot younger, as early as 5 years old, and some reports even as young as 2.”

The analysis incorporated 3 stakeholder perspectives: caregivers of children aged 2–11 years, adolescents aged 12–17 years who completed the questionnaire themselves, and clinicians across allergy/immunology, pediatrics, and primary care who were interviewed about their experiences treating pediatric HAE. Together, these viewpoints helped characterize daily life disruptions that have not been well quantified in the literature.

Soteres emphasized that HAE attacks in children are often misunderstood. Rather than brief episodes, attacks can escalate over several hours and peak for 2 to 5 days, interfering with school, social activities, sleep, athletics, and family routines.

Participants identified several aspects of attacks that are particularly disruptive: prolonged pain, functional limitations, swelling in visible areas, and embarrassment or fear associated with attacks in sensitive locations such as the mouth or genital region. Soteres noted that clinicians should be aware that these physical and emotional burdens arise earlier than previously recognized, reinforcing the need for timely diagnosis and individualized care planning.

Soteres highlighted the importance of both on-demand and preventive therapy. He noted that all pediatric patients should have rapid access to ≥ 2 doses of on-demand treatment. Preventive strategies, whether daily oral therapies or intermittent injections, can help reduce the frequency and severity of attacks and create greater day-to-day stability for families.

“[We’re still working to understand] uncontrolled hereditary angioedema in the pediatric population,” Soteres said. “The poster we're presenting today gives an important explanation and insight into the disease state in that group.”

Relevant disclosures for Soteres include GENZYME CORPORATION, BioCryst US Sales Co., LLC, Takeda Pharmaceuticals U.S.A., Inc., CSL Behring, Pharming Healthcare, Inc., and AstraZeneca Pharmaceuticals LP.

At ACAAI 2025, HCPLive also spoke with Patricia Stewart, MD, from the Mississippi Asthma & Allergy Clinic, and Raffi Tachdjian, MD, MPH, from UCLA Health, on the burden of HAE attacks among children.

References

1. Soteres D. Burden of Attack for Young Patients with Hereditary Angioedema and Their Caregivers. Presented at ACAAI 2025 in Orlando, Florida, from November 6 – 10.

2. Stewart P. Emergency Care Still Falling Short for Children With HAE, With Patricia Stewart, MD. Hcplive.com. Published November 18, 2025. Accessed November 20, 2025. https://www.hcplive.com/view/emergency-care-falling-short-children-hae-patricia-stewart-md

3. Tachdjian R. Importance of Addressing the Psychosocial Burden of HAE Among Children, With Raffi Tachdjian, MD. Hcplive.com. Published November 18, 2025. Accessed November 20, 2025. https://www.hcplive.com/view/importance-addressing-psychosocial-burden-hae-among-children-with-raffi-tachdjian-md