Living with Hereditary Angioedema (HAE)
Living with HAE means more than just managing physical symptoms—it can impact emotional health, social interactions, and overall quality of life.1,2
In a 2017 survey of 445 patients, a higher frequency of HAE attacks was also associated with lower energy levels and greater difficulty performing basic daily activities over the course of a week1:
34% of patients reported that their physical health or emotional problems interfered with their ability to participate in social activities at least some of the time1
Patients reported that HAE-related symptoms affected their work productivity for a mean (SD) of 2.3 (2.6) hours and their ability to perform non-work-related activities for a mean (SD) of 3.2 (3.0) hours over the previous 7 days1
A higher frequency of HAE attacks also impacts patients'1 careers over time:
In a 2007-2008 study with 457 patients, 69% of patients reported that symptoms prevented them from apply to certain types of jobs1
Nearly 80% of 74 patients in a 2011 study reported missing work during severe attacks1
These, along with other psychological impacts, can lead to a burden that goes far beyond the physical impacts of HAE. Patients may also struggle, or have struggled in the past, with finding a healthcare provider who understands HAE and may carry the burden of needing to educate healthcare providers, particularly when they are in need of emergency care.3,4
“Because HAE is a rare disease, most doctors don’t see a lot of patients with it, so they may not realize how difficult it is to experience an attack, and how much of a burden HAE can be.”
Katie, living with HAE
Supporting families living with HAE
HAE impacts both adults and children, with symptoms often intensifying after puberty. Patients frequently experience anxiety over the possibility of passing HAE to their children, and family planning becomes a sensitive topic.1,3
As an obstetrician or primary care physician, your role is crucial in helping patients navigate these concerns. Be prepared to discuss family planning, potential triggers, and management strategies, especially for women who may experience HAE attacks linked to hormonal changes, sexual activity, or estrogen-based medications.1,3,5
Your guidance can help empower patients and their families to face the challenges of HAE with greater confidence and peace of mind.
