Understanding Hereditary Angioedema (HAE) HAE is a rare inherited disease that can cause considerable swelling in specific parts of the body, including the abdomen, face, and throat.

HAE is a rare disease; it affects only about 1 in 10,000 to 50,000 individuals. And because HAE can resemble other conditions, such as allergies or stomach problems, diagnosis is often delayed. Because delay of diagnosis is so common, it’s important to talk to your doctor about HAE as a possible cause of your symptoms.

*Peer supporters are not healthcare professionals or medical experts. For medical questions, patients should contact their physicians.

What causes HAE?

People living with HAE are either missing a blood protein called C1 esterase inhibitor (C1-INH) or have normal levels of C1-INH that is dysfunctional. When the body’s need for C1-INH overwhelms its ability to keep up with demand, a sudden attack can occur.

Treating HAE Attacks

Acute attacks in the abdomen, face, or throat may be treated by taking a C1-INH concentrate, such as Berinert, which is used to treat attacks on demand. Berinert is approved for patient self-administration after proper training by a healthcare professional.

Berinert treats two common types of HAE:

  • Type I: The body doesn’t produce enough C1-1NH. Approximately 85% of people living with HAE have this type
  • Type II: The body produces C1-1NH that does not function correctly. Approximately 15% of people living with HAE have Type II.
  • There is also another, very rare form of HAE, called type III. Learn more about HAE type III at AllAboutHAE.com

Managing debilitating, painful attacks with on-demand treatment

Attacks of HAE in the throat are the most dangerous, because swelling that closes off the airway may lead to death. Abdominal attacks cause acute pain in the abdomen and sometimes also cause nausea, vomiting, and diarrhea. Peripheral attacks, such as attacks in hands or feet, can result in impaired function.

All these consequences of HAE attacks can be minimized by on-demand treatment. Experts now suggest that every patient with HAE should be considered for home therapy and self-administration training, once the diagnosis of C1-INH deficiency is confirmed.11

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Recognizing Symptoms

Learn about the symptoms of HAE, the difference between the three different types, and how it is diagnosed.

Home Understanding HAE
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Important Safety Information

Berinert®, C1 Esterase Inhibitor (Human), is used in adults and children to treat swelling and/or painful attacks of hereditary angioedema (HAE) affecting the abdomen, face or throat. The safety and efficacy of Berinert in preventing HAE attacks have not been established.

Do not use Berinert if you have experienced life-threatening allergic reactions or severe hypersensitivity to the product. Inform your healthcare provider of all medications you are taking and of any medical conditions, especially any history of blood-clotting problems.

Blood clots have occurred in patients receiving Berinert. Tell your healthcare provider if you have a history of heart or blood vessel disease, stroke, or blood clots, or if you have thick blood, an indwelling catheter/access device in a vein, or have been immobile for some time. Certain medications, such as birth control pills, may also increase your risk of clotting problems.

Report to your physician or an emergency room any signs and symptoms of a blood clot, including pain and/or swelling or discoloration of an arm or leg, with warmth over affected area; unexplained shortness of breath; chest pain or discomfort that worsens on deep breathing; rapid pulse; and numbness or weakness on one side of the body.

In addition, report immediately any signs or symptoms of allergic reactions to Berinert, including hives, chest tightness, wheezing, difficulty breathing, turning blue, faintness, facial swelling and fast heartbeat.

If you have been trained to self-administer Berinert, immediately prepare the prescribed dose at the first symptoms of an attack. Seek immediate medical attention and do not begin to self-adminster if an HAE attack has progressed to a point where you will be unable to prepare or administer a dose of Berinert.

If you self-administer to treat a laryngeal attack, immediately seek medical attention afterward. If you self-administer for an abdominal attack, inform your physician so that other possible causes can be ruled out.

Call your doctor right away if swelling is not controlled after use of Berinert.

In clinical studies, the most serious adverse reaction reported in subjects who received Berinert was an increased severity of the pain associated with HAE. In the placebo-controlled clinical trial, the most common adverse reaction reported more often among subjects who received Berinert than those receiving placebo was dysgeusia (a bad taste in mouth). Tell your healthcare provider about any side effect that bothers you or does not go away.

Because Berinert is made from human blood, the risk that it may transmit infectious agents, including viruses and theoretically, the agents of Creutzfeldt-Jakob Disease (CJD) and its variant form (vCJD), cannot be completely eliminated.

Please see full prescribing information for Berinert, including the patient product information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

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