What is HAE?

Hereditary Angioedema (HAE) is a rare genetic disease that causes unpredictable attacks of extreme swelling. Attacks range from inconvenient hand swelling to grotesque facial distortion to painful stomach swelling requiring hospitalization to throat swelling that can lead to suffocation and death.

HAE is very rare, only affecting 1 in 50,000 people. Because of its rarity, many healthcare professionals have never heard of it, causing patients to often be misdiagnosed or treated incorrectly, sometimes even having unnecessary surgeries. In America, it takes nine years on average for an HAE patient to get diagnosed; that is almost a decade of not knowing what is wrong and of not having proper treatment.

The delay in diagnosis is appalling, but more troubling is that six to ten patients still die every year from HAE, despite the recent development of life-saving medication. Many of these deaths are a result of ignorance about the disease or lack of access to medication. Some deaths even happen within a hospital setting, where the patient could have easily been saved.

To learn more, visit haea.org