Awareness and experience of prodromal signs and symptoms
Of the patients surveyed, 60% were usually aware of early signs/symptoms before swelling began, including 19% who said they were always aware. In terms of the time before the swelling started, 38% of participants noticed prodromes within 2 hours, a further 27% between 2 and 6 hours, and 29% more than 6 hours before the swelling started. Interestingly, in the UK females tended to become aware of prodromes earlier than males (>2 hours before swelling, 61% females vs. 47% males), whereas, in Spain, the opposite was seen (46% females vs. 70% males).
Participants experienced a broad range of early signs/symptoms. Feeling tired/fatigued was the most frequently reported prodromal symptom (64% overall; 71% female and 52% male), followed by pressure or tightness in the skin (53%), pressure in the abdomen (52%) and widespread pain in the abdomen (48%) (Figure 1). Over a third of participants experienced a skin rash including EM (Figure 1).
The survey also examined the location of HAE swelling attacks themselves. Patients reported that swellings mostly occurred in the abdomen (89%), followed by hands (71%), feet (63%) and then face (40%). A higher proportion of male participants described swelling in their genital area (37%) compared to females (16%).