What Is HAE?

“When testing showed that I have HAE, I was relieved to know that my condition had an actual name.”

Marsha — Diagnosed with HAE in 1989

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.

How many people have hereditary angioedema? 1 in 10,000 to 1 in 50,000 globally

HAE can cause attacks of painful, disabling swelling in any part of the body, but characteristic locations include:

  • Abdomen
  • Face
  • Feet
  • Genitals
  • Hands
  • Throat

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.

Learn more about hereditary angioedema attacks

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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.
Two main types of HAE breakdown: Type I HAE 85%, Type II HAE 15%

A third type of HAE has also been identified. This type of HAE has similar symptoms to HAE type I and II. However, these patients have normal levels of functional C1 esterase inhibitor.

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