Living with hereditary angioedema (HAE) With day-to-day demands, living with HAE can be challenging.

An attack can throw off your schedule, make it difficult to balance a job and other daily responsibilities; or even worse, put you in the hospital.

HAE attacks are unpredictable, painful, and potentially life-threatening, which can place a large burden of stress on you and your caregivers. You may be worried about the next attack and reluctant to make plans.

Living with HAE means understanding how your specific symptoms trigger attacks and how you and your physician can best manage HAE.11

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

Start taking control of your HAE: Recognize and avoid triggers

The actual causes of hereditary angioedema attacks have not been established and seem to differ from person to person. However, people living with HAE often report that certain triggers can lead to attacks. These triggers may include:

  • Stress or sickness
  • Hormonal changes
  • Mild trauma
  • Any dental work or surgical procedures
  • Certain medications, such as oral contraceptives containing estrogen and ACE inhibitors

To help identify your triggers, try keeping a treatment journal to record details about your attacks, including location, frequency, duration, and potential triggers. Be sure to share your journal with your doctor.

Once triggers are identified, it’s important to avoid situations that may bring them on. If stress is a trigger, try to avoid highly charged situations. Ask friends and family members for help and support when you feel overwhelmed, and use coping strategies that work for you. If certain medications are a problem, talk to your HAE specialist about alternatives.

Be prepared for an attack

For many people living with hereditary angioedema, an attack is not preventable, even with prophylactic therapy. The best option is to be well prepared when an attack occurs.

  • Educate family, loved ones, and coworkers about your condition and always pack your Berinert and infusion supplies before you travel. For extra preparation, the Berinert Expert Network (B.E.N.) or the HAEA can provide you with information regarding which hospitals currently stock Berinert.
  • Keep a diagnosis letter from your doctor with you at all times, as well as an emergency patient information card that communicates your medical needs—in the event that you’re unable to relate important medical information.
  • Work with your doctor and your caregivers to develop an individualized action plan, so you’ll know what to do when an attack happens. Make sure you carry enough Berinert with you at all times to treat up to 2 attacks.11
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Treatment Options

The two types of HAE therapies are prophylaxis and acute. Learn more and work with your doctor to choose the right treatment option for you.

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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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