Objective:

To understand the patient’s journey with HAE from symptom initiation to diagnosis, treatment allocation, follow-up, and the impact of the disease on their quality of life in Mexico.

Methods:

A survey was administered to the patients with HAE. Participants completed a questionnaire covering five domains: patient journey; effects on productivity, school performance and daily activities; quality of life; anxiety and depression. Responses were analyzed using descriptive statistics.

Results:

A total of 17 surveys were analyzed (15 women and 2 men, age range: 23-67 years). Type I HAE was most common (71%), normal C1 inhibitor HAE was 12% and 18% did not know their HAE type. The average disease evolution was 13.7 years and the time from symptom initiation to diagnosis was 20 years. 59% of patients knew of one or two treatments available, 12% knew 3 treatments and 18% were aware of 4 or more, 12% were not aware of any treatments. 53% had a job, 18% referred a severely anxious state, 41% were depressed and all patients referred some social impact due to HAE.

Conclusions:

There is a need to reinforce the knowledge of general practitioners on HAE to promote an earlier diagnosis and awareness of rare diseases and their impact on quality of life among the general population and promote the removal of barriers to treatment.