Understanding Hereditary Angioedema

Hereditary angioedema (HAE) is a rare, potentially life-threatening genetic disorder caused by the deficiency of C1 esterase inhibitor, a protein in the blood that helps prevent swelling. Common HAE symptoms include intense, sometimes painful attacks of swelling in any part of your body, but typically in the extremities (hands, feet, arms, and legs), abdomen, face, genital area, or throat. These attacks can happen without warning and can last for days.

Causes and Symptoms of HAE

Learning about your condition is an important aspect of living with hereditary angioedema.

HAE is an inherited disorder. If you have a parent with HAE, you have a 50% chance of developing it. However, 25% of all HAE patients have no family history of the disease. HAE affects approximately 6,000 people in the US, including men and women of all races.

My mother has it, her father had it,
my uncle has it, and his son has it. My children have a 50/50 shot at having it. quote


Husband and father living with HAE


HAE attacks can affect people in vastly different ways. Some people suffer attacks once or twice a year; others may suffer up to three attacks a week. Attacks vary but may include: extremity swelling (ie, arms and legs), abdominal swelling, facial swelling, urogenital swelling, and/or life-threatening swelling of the throat. Read more about the symptoms of HAE.

Types of Hereditary Angioedema

 There are 2 types of HAE:

  • Type I HAE is caused by low levels of functioning C1 esterase inhibitor (ranging from undetectable levels to around 30% of normal levels in some people with HAE). About 85% of people with HAE have type I
  • Type II HAE is caused by dysfunctional C1 esterase inhibitor in the body. About 15% of people with HAE have type II

CINRYZE® (C1 esterase inhibitor [human]) is effective in addressing both types of HAE. Learn more about this therapy.

HAE Family Tree Facebook App

Build an HAE Family Tree on Facebook and learn more about your HAE family history.

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Share Your HAE Knowledge

Spread awareness and help family and friends better understand HAE with the HAE Awareness Kit.

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CINRYZE® (C1 esterase inhibitor [human]) is an injectable medicine that is used to help prevent swelling and/or painful attacks in teenagers and adults with Hereditary Angioedema (HAE).

Important Risk Information
You should not use CINRYZE if you have had life-threatening immediate hypersensitivity reactions, including anaphylaxis to the product.

Tell your healthcare provider about all of your medical conditions, including if you:

  • have an indwelling catheter/access device in one of your veins.
  • have a history of blood clots, heart disease, or stroke.
  • are taking birth control pills or androgens.
  • are pregnant or planning to become pregnant. It is not known if CINRYZE can harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if CINRYZE passes into your milk and if it can harm your baby.

Tell your healthcare provider and pharmacist about all of the medicines you take, including all prescription and non-prescription medicines such as over-the-counter medicines, supplements, or herbal remedies.

Allergic reactions may occur with CINRYZE. Call your healthcare provider or get emergency support services right away if you have any of the following symptoms:

  • wheezing
  • difficulty breathing
  • chest tightness
  • turning blue (look at lips and gums)
  • fast heartbeat
  • swelling of the face
  • faintness
  • rash
  • hives

Because CINRYZE is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

The most common side effects seen with CINRYZE were headache, nausea, rash, and vomiting. These are not all the possible side effects of CINRYZE. Tell your healthcare provider about any side effect that bothers you or that does not go away. You can also report side effects to ViroPharma Medical Information at (866) 331-5637 or the FDA at 1-800-FDA-1088.

Medicines are sometimes prescribed for purposes other than those listed here. Do not use CINRYZE for a condition for which it is not prescribed. Do not share CINRYZE with other people, even if they have the same symptoms that you have.

Before starting CINRYZE, please read the accompanying Patient Information carefully and each time you get a refill. This information does not take the place of talking with your healthcare provider, and it does not include all of the important information about CINRYZE. If you have questions after reading this, ask your healthcare provider.

Please see the Full Prescribing Information.

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