HAE Day icon.

This hae day :–) speak out about the true impact of your HAE.

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Can't stop thinking
about the next
HAE attack?

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.

Face Throat Abdomen Genitals Feet Hands

Quick facts about HAE

~54%

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.

Family inheriting HAE.

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.

Vial with C1-INH.

Missing C1-INH is usually the cause.

People with HAE are typically missing an important protein called 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.

HAE is ever-changing

You can't predict when an HAE attack is going to happen. In fact, the location, frequency, and severity of attacks can all change over time. Certain life events (like pregnancy or puberty), physical activity, or foods can also trigger attacks. However, there are steps you can take to manage your HAE. Talk with your doctor.

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

Matt, patient 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.

HAE is a rare disease. 1 in 50,000 globally

Types of HAE

There are 3 types of HAE. They have similar symptoms but result from different genetic mutations.

Type I

Low level of C1-INH
Low C1-INH levels graph.
C1-INH functions normally
Normal C1‐INH functions.
Most common
of people with HAE ~85%

Type II

Normal level of C1-INH
HAE type II with normal level of C1‐INH level.
C1-INH doesn't function normally
In HAE type II, C1‐INH does not function normally.
Less common
of people with HAE ~15%

Normal C1-INH

Normal level of C1-INH
HAE type II with normal level of C1‐INH level.
C1-INH functions normally
Normal C1‐INH functions.
Extremely rare
of people with HAE <1%

Scientists are unsure of what causes HAE attacks in this type.

Q+A

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.

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