The role of the meaning-making process in the management of hereditary angioedema

The first descriptions of hereditary angioedema (HAE), in the early 1500’s, ascribed it to “neuroticism.” However, HAE is a rare autosomal dominant disease that causes swelling of the skin and mucosal tissues, but that varies greatly in terms of localization, frequency, and intensity both within and between individuals. Although the identification of a genetic origin dates to 1963, psychological stress is still one of the most reported triggers, often being cited in the conclusions of research and clinical reports. Despite this widespread assumption, the role of stress in HAE has never been analyzed in depth. In this chapter, the authors present their reflections on the results of the qualitative component of a broader mixed-method research on the interaction between stress and emotion regulation in the variability of clinical presentation of HAE. The role of psychology is discussed—as brought into play by the request of the medical team—in terms of research and intervention for HAE in medical contexts. They start with the results from a semantic and semiotic analysis of an ad-hoc semi-structured interview of the parents of young patients on the variability of the disease. This reliance on “lay experts” allows for a broader understanding of the phenotypic variability of HAE, as well as of the relational contexts of patients, including the relationship between the family, patient, and doctor. They conclude by highlighting the importance of shared meaning-making processes when seeking to influence strategies for the management of the disease.