Studies Reveal How Hereditary Angioedema Disrupts The Lives Of Children And Families

Two caller studies being presented astatine nan 2025 American College of Allergy, Asthma and Immunology (ACAAI) Annual Scientific Meeting successful Orlando shed ray connected really hereditary angioedema (HAE) – a rare, perchance life-threatening illness which causes unpredictable swelling – profoundly affects nan regular lives, affectional wellbeing, and aesculapian experiences of young patients and their caregivers.

Living pinch HAE tin origin a superior affectional and societal toll connected young patients and their caregivers, according to findings from researchers who conducted interviews and online discussions pinch 31 children (ages 2–11), 19 adolescents (ages 12–17), and 85 healthcare professionals (HCPs).

The study recovered that adolescents perceived a greater wide effect of HAE connected their lives than caregivers reported for younger children. Participants described HAE arsenic disrupting schoolhouse attendance, sports, and societal activities. Even betwixt attacks, galore children expressed ongoing worry astir erstwhile nan adjacent section mightiness occur.

While 16 of 23 children said they felt happy erstwhile symptom-free, astir 40% said they still worried astir early attacks. HCPs overwhelmingly reported that HAE causes affectional distress for some children and caregivers, often starring to anxiety, depression, and societal isolation. Many besides noted that nan information tin lend to world struggles and missed developmental opportunities."

Raffi Tachdjian, MD, MPH, ACAAI member, allergist and lead writer of nan study

The researchers concluded that "HAE affects overmuch much than beingness wellness – it influences really children position themselves, interact pinch others, and prosecute successful mundane life. Addressing nan intelligence wellness and quality-of-life impacts is captious to broad care.

A 2nd study explored emergency section (ED) and infirmary experiences among young patients pinch HAE, drafting insights from 19 adolescents, 31 caregivers, and much than 100 healthcare professionals. About half of adolescents and caregivers reported astatine slightest 1 ED aliases infirmary sojourn earlier property 12.

While immoderate described affirmative experiences – specified arsenic accelerated curen and denotation alleviation – astir reported important difficulties. Common challenges included delays successful receiving care, deficiency of medicine availability, and healthcare professionals unfamiliar pinch HAE. These factors contributed to fearfulness and accent for some patients and families.

"Three retired of 4 HCPs expressed interest astir their patients receiving inadequate attraction and nan anticipation of semipermanent trauma resulting from antagonistic infirmary experiences," said allergist Patricia Stewart, MD, ACAAI personnel and lead writer of nan study. "Many noted that these encounters tin lead to avoidance of aesculapian care, moreover successful emergencies."

The researchers concluded that emergency visits are often unavoidable for children pinch HAE, but that they tin beryllium frightening and traumatic. Improving consciousness and preparedness among healthcare providers could make a captious quality for families of children pinch HAE.

Together, nan 2 studies stress that managing hereditary angioedema successful young patients requires much than aesculapian intervention-it demands attraction to intelligence health, family dynamics, and nan value of attraction experiences.

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

Presenter: Raffi Tachdjian, MD, MPH

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

Presenter:  Patricia Stewart, MD