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What is HAE?
Hereditary angioedema (HAE) is a very rare genetic condition where people experience repeated and often unpredictable attacks of swelling in various parts of the body – usually the arms, legs, face, abdominal area, and upper airway. These attacks can be painful and debilitating.1
HAE is very rare, affecting about 1 in 10,000 to 1 in 50,000 people.1
What causes HAE?
HAE can be caused by people either not having enough of a blood protein called C1-inhibitor, or having C1-inhibitor that doesn’t work properly. In most cases, this is caused by a genetic defect. In other cases, people have normal C1-inhibitor, but genetic defects in other genes are causing their angioedema.1
HAE is called “hereditary” because the genetic defect that causes it can be passed down from one family member to another.1
have low levels of C1-
inhibitor due to a
defective gene on
chromosome 11.1
HAE have normal or
even elevated levels
of C1-inhibitor, but the
C1-inhibitor protein
does not work
properly.1
C1-inhibitorWith normal C1-inhibitor HAE,
a person’s C1-inhibitor levels
are normal, and the C1-
inhibitor protein works
properly. However, they have
genetic defects in other
genes that cause their
HAE symptoms.2
What triggers HAE attacks?
Sometimes attacks can be triggered by physical trauma or emotional stress, but in many cases, there is no known trigger.1
How often do HAE attacks happen?
And how long do they last?
The frequency and severity of HAE attacks can vary quite a bit – even among family members who have it. However, many people with HAE have 3 or more attacks per month. If left untreated, an HAE attack can last up to 3 days, and occasionally, even longer.1
Even though everyone with HAE experiences their disease differently, it’s likely that HAE has affected your life in a number of ways, like missing work or school. Take our self-assessment questionnaire to see how HAE is impacting you.
If you or someone you love has HAE, know that there are lots of treatments available. Talk to your doctor about all your options – including oral ones.