Understanding Your Hereditary Angioedema (HAE)

HAE is a rare genetic condition that affects the blood vessels and organs and can cause severe swelling in  different parts of your body.

HAE is classified into three types

Type I

Makes up 80-85% of  HAE cases

Caused by low levels of C1 inhibitor (C1-INH), which means there is not enough of this protein to help control swelling.

Debbie, Tequoia, and Ashley  RUCONEST Patients

Type II

Makes up 15-20% of  HAE cases

fNormal or above normal levels of  C1 inhibitor (C1-INH) protein are present but the C1-INH doesn’t work as it should to control swelling.

HAE-NL-C1INH

(Formerly known as type III)

New information suggests HAE normal makes up 19-23% of cases, which would impact the prevalence of Type I and Type II.

Caused by low levels of C1 inhibitor (C1-INH), which means there is not enough of this protein to help control swelling.

Why HAE happens.

HAE starts with a genetic mutation of the C1 inhibitor  (C1-INH), a protein that helps control swelling.

When C1-INH isn’t working properly, the body produces too much bradykinin—a peptide that increases fluid leakage.

This causes fluid to build up in your body, leading to swelling.

If one of your parents has HAE, you have a 50% chance of having it too. But, it can also occur without a family history of the disease.

Normal levels* of C1-INH are represented by a range, with a minimum of ~70%

Person without HAE

Person with HAE

C1-INH Levels are below normal

*Normal Level = 1U of C1-INH Activity per mL of Normal Human Plasma

Hear how Alex, a RUCONEST patient, explains her swells

What happens in the body that causes HAE swells?

When C1-INH levels are too low or C1-INH is not working properly, fluid can leak from the blood vessels into the body and cause swelling. 

One in

50,000

people

 is affected by hereditary angioedema

HAE Advocacy

If you’re suffering from HAE, there is an organization working diligently to make sure you know you’re not alone.

The US Hereditary Angioedema Association (HAEA) is a nonprofit patient advocacy organization dedicated to serving people with angioedema. They provide patients and families with a support network and a wide range of services.

See how HAEA can help

Connect with Others

Patient Events

Find live and virtual HAE programs that may be in your area.

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Real Patients. Real Experiences.

See how others are taking control of HAE symptoms with RUCONEST.

Watch Their Stories