Discover hereditary angioedema
Hereditary angioedema (HAE) is a rare genetic disorder. In fact, it's thought that only 1 in 10,000 to 1 in 50,000 people in the entire world have HAE. And it's estimated that only 6,000 people in the United States live with HAE.
It can cause sudden attacks of intense, sometimes painful swelling anywhere in the body, but the most common locations include the:
It's important to remember that an HAE attack that affects the throat is potentially life-threatening, because it puts you at risk of suffocation. Make sure you have a plan in place for this type of attack and seek emergency care as soon as possible.
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How do you get HAE?
HAE is usually passed down through families, but that’s not always the case. Some people develop HAE because of a spontaneous change in their genetic code, so it can’t always be traced to a relative.
Most people with HAE either don't have enough of a protein called C1-esterase inhibitor or it doesn't work the way it should. When there isn't enough C1-esterase inhibitor or it isn't working properly, it initiates episodes of swelling.
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Types of HAE
There are two main types of HAE. They have similar symptoms but result from different genetic mutations.
- Type I HAE is most common. People with this type of HAE do not make enough C1-esterase inhibitor.
- Type II HAE happens in people who produce normal levels of C1-esterase inhibitor, but the protein doesn’t work the way it should.