HAE is characterized by spontaneous and recurrent episodes of swelling of the skin, the airways and the internal organs. HAE patients often withdraw from their social lives because of the disfiguration, discomfort and pain caused by symptoms. Almost all patients suffer from bouts of severe abdominal pain, nausea, vomiting and diarrhea caused by swelling of the intestinal wall. Edema of the throat, nose or tongue is particularly dangerous and potentially life threatening as it can lead to obstruction of the airway passages. There is currently no known cure for HAE, but it is possible to treat the symptoms.
HAE affects about 1 in 10,000-50,000 people worldwide. A lot of patients are still seeking the right diagnosis: although HAE is (in principle) easy to diagnose, it is frequently identified very late or not discovered at all. Please see www.haei.org