The lived experience of women with Hereditary Angioedema (HAE)

Abstract

Background HAE is caused by a deficiency in the C1 inhibitor triggering episodes of edema. These attacks are life threatening due to inflammation of the larynx. Hereditary Angiodema (HAE) effects up to 1 in 100,000 and little is known about the psychological impact. Previous research found patients experiencing depression and anxiety. There is a 60% pre-dominance in women being diagnosed. Women’s conditions are also more symptomatic than those of men’s, as HAE can be triggered through a heightened hormonal activity, stress and female medication. The aim of this research was to examine the lived experience in women in the UK with a diagnosis of HAE Methods: 10 women were recruited through online membership via the HAE UK Association. The written accounts were analysed by Giorgi’s (2012) descriptive phenomenological approach. Results: The data revealed three themes: (i) of a double-edged sword, in which medication for HAE was found to be miraculous but with the downside of severe side effects; (ii) the second was restrictions of events and activities females could not participate in, and where females needed to be wary of HAE triggers; and, (iii) finally the rarity of the disease, as women were questioned about the legitimacy of their condition and experienced a lack of professional awareness. Discussion: The findings revealed loneliness and isolation in these women which has not been identified thus far. Raising awareness seems imperative, especially as this disease seem to have effected various areas of the women’s lives, such as work, family, and social activities.