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Hereditary angioedema (HAE) is a rare disease
HAE can be debilitating and potentially life-threatening. It can cause painful, unpredictable attacks of swelling that can happen at any time in different parts of the body.
Quick facts about HAE
54% had experienced a throat attack.
From a 2006 study of 201 people with HAE
Laryngeal attacks (or throat swells) can be life-threatening due to the risk of suffocation, so it is important to seek medical attention right away. It's also important to have an emergency plan in place.
HAE often runs in families.
75% of HAE diagnoses are due to a family history of HAE. If one parent has HAE, there's a 50% chance their child will have it. If a child does not inherit the disease from their parents, they will not pass it on to future generations.
Missing C1-INH is usually the cause.
People with HAE are typically missing an important protein called
Definition: C1 esterase inhibitor (C1-INH)
C1 esterase is a protein inhibitor found in the blood. When it's at normal levels and working properly, it helps to regulate swelling in the body. If there's not enough working C1 esterase inhibitor (C1-INH), your body isn't able to perform this function—and that can put you at risk of an HAE attack. in their blood, or the C1-INH they have doesn't work the way it should. This can lead to the swelling and pain of an HAE attack.
Everyone's experience with HAE is different. It's unique to each person, and the frequency and severity of attacks can change over time for each of us, too. Talk about unpredictable.
Matt, Living with HAE
How rare is HAE?
It's thought that only 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.
Types of HAE
There are 3 types of HAE. They have similar symptoms but result from different genetic mutations.
Scientists are unsure of what causes HAE attacks in this type.
How do I find a doctor who treats hereditary angioedema (HAE)?
Finding a doctor who has experience diagnosing and helping patients manage HAE can be challenging. The US Hereditary Angioedema Association (HAEA) provides an online tool that can help you find a doctor who treats HAE.