A real-world, prospective, observational study published in The Journal of Allergy and Clinical Immunology: In Practice reported that patients with hereditary angioedema (HAE) continue to shoulder an exceptionally high disease burden, despite recent advancements in treatment.

The unexpected nature of HAE, as well as the severity and pain associated with an attack, considerably deteriorate patients’ quality of life. These attacks, seemingly sporadic in nature, limit what an individual can do and plan for in daily life. 

HAE is presently incurable; current treatment aims to relieve morbidity and extend survival. Prophylactic treatments in recent years have seen tremendous progress, depressing the frequency of attacks in a given time period. 

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The authors of the study sought to characterize the disease burden and its impact on quality of life in a group of Australians diagnosed with HAE. Patients aged 12 years and above were invited to participate via their referring specialist or the patient organization HAE Australasia. Selected participants were contacted by weekly SMS to obtain real-time responses about their attacks and use of treatment. The 2 SMS questions that were asked concerned the types of medications used and whether participants had an acute attack within the previous week. 

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Fifty-five participants enrolled in the study that ran from July 2019 to November 2020. Based on the feedback received, clinicians obtained real-time information regarding the unpredictable and debilitating nature of HAE, especially when one is experiencing an attack. The research team also discovered that a diagnosis of HAE significantly hampers an individual’s ability to participate in school/work activities, leading to a cumulative loss of productivity. 

The researchers also reported that adequate prophylaxis could significantly reduce the frequency of attacks from baseline. However, when attacks do occur, some patients choose to self manage; among the reasons for this are their perception of the attack as “mild” and reluctance to use available treatments due to costs.

“Our study has demonstrated that the use of modern prophylactic therapy results in improvement in attack rates,” the authors wrote. “Thus, wider access to safe and effective prophylactic therapies for patients living in Australia should be a priority.” 


Katelaris CH, Fenton P, Button PH, et al. Living with hereditary angioedema in Australia: findings from a national observational study using SMS to monitor the burden of diseaseJ Allergy Clin Immunol Pract. Published online March 12, 2023. doi:10.1016/j.jaip.2023.02.037