What Is HAE?

“For me, getting diagnosed was a long and complicated road because HAE is so rare.”

Liz — Diagnosed with HAE in 2013

Discover hereditary angioedema

Hereditary angioedema (HAE) is a rare genetic disorder that can cause attacks of painful, disabling swelling. Attacks can occur 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

Would you like to learn more about HAE attacks?

HAE usually runs in families, which is why it's called "hereditary." People with HAE are typically missing an important protein called C1 esterase inhibitor in their blood, or it doesn't work the way it should. You can keep learning about what happens in the body during an HAE attack here.

HAE is rare

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

Types of HAE

There are three types of HAE. They have similar symptoms but result from different genetic mutations.

Type 1 hereditary angioedema results from a mutation that causes there to be a low level of C1 esterase inhibitors but the C1 esterase inhibitors function normally.  This is the most common type of hereditary angioedema, affecting 85% of the population of people with HAE.
Type 2 hereditary angioedema results from a mutation that causes there to be a normal level of C1 esterase inhibitors, but the C1 esterase inhibitors do not function normally.  This is a less common type of hereditary angioedema, affecting less than 15% of the population of people with HAE.
Hereditary angioedema with normal C1-INH (previously known as Type 3 HAE)  results from a mutation that causes HAE even when there are normal levels of C1 esterase inhibitors that function normally.  This is an extremely rare type of hereditary angioedema, affecting less than 1% of the population of people with HAE.

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