Living With HAE

ACE Inhibitor: Class of medicines used to treat high blood pressure and other diseases.
Anabolic steroid: Also referred to as attenuated androgen, a class of steroid hormones used to prevent HAE attacks. Although their mechanism of action in HAE patients is unknown, these agents are believed to partially reverse the biochemical defect by increasing levels of C1-esterase inhibitor (C1-INH), helping to prevent angioedema attacks in patients with inherited C1-INH deficiency.
Antifibrolytic agent: Medicines used to prevent HAE attacks. These agents inhibit the activation of plasmin, a chemical in the blood that can make the C1-INH less effective.
Attenuated androgen: Also referred to as anabolic steroid, a class of steroid hormones used to prevent HAE attacks. Although their mechanism of action in HAE patients is unknown, these agents are believed to partially reverse the biochemical defect by increasing levels of C1-esterase inhibitor (C1-INH), helping to prevent angioedema attacks in patients with inherited C1-INH deficiency.
Bradykinin: A protein that causes blood vessels to expand (dilate) and leak serum and other fluids.
C1 inhibitor: Also referred to as C1-INH, a protein found in the fluid part of your blood that controls C1, a component of your body's complement system. Abnormal swelling can result when C1-INH is insufficient or defective.
C1-INH: Also referred to as C1 inhibitor, a protein found in the fluid part of your blood that controls C1, a component of your body's complement system. Abnormal swelling can result when C1-INH is insufficient or defective.
Complement system: The complement system is made up of proteins like C1 that float in your bloodstream, which work with the immune system to fight organisms like bacteria, viruses and parasites.
Drug formulary: A list of prescription medications selected for coverage under a health insurance plan.
HAE: HAE, or Hereditary Angioedema, is a rare, hereditary disease of the immune system that affects an estimated 1 in 10,000 to 1 in 50,000 adults and children globally. HAE causes attacks of spontaneous swelling that are often painful and severe, and can be life-threatening.
Hereditary Angioedema: A rare, hereditary disease of the immune system that affects an estimated 1 in 10,000 to 1 in 50,000 adults and children globally. Hereditary Angioedema (HAE) causes attacks of spontaneous swelling that are often painful and severe, and can be life-threatening.
Laryngeal attack: An HAE attack that affects the larynx (throat); this can block or close the airway, leading to difficulty breathing and, potentially, death.
Plasma kallikrein: A chemical in the bloodstream that is involved in blood clotting; it plays an important role in causing the swelling of HAE attacks.
Preventive therapy: In HAE, medicine taken to prevent attacks.
Prodrome: One or more physical warnings of an HAE attack; can appear as a rash or a feeling of skin tightness.
Serum: The clear, watery, fluid-component of blood that resembles fluid in a blister.
Subcutaneous: Beneath the skin.
Trigger: In HAE, something that causes an attack. Stress and trauma are two common HAE attack triggers.

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Living with HAE

No question about it - life with HAE can be difficult for patients, as well as for the people who care about them.

Education about the disease is critical, so that you and your family understand the disease, how it is inherited, what may precipitate attacks, what treatments are available, and what to do in an emergency. This site is a great place to start!

This section will help you learn about how to live better with HAE, including:

Coping with Attacks
Tips to help you prepare for HAE flare-ups.

Get Connected
The ways to reach out to others with HAE using the Web.

Pregnancy & Childbirth
How pregnancy can affect your HAE symptoms.

Resources
Learn about organizations and other resources that can help you live better with HAE.

When Your Child has HAE
Helping your child - and yourself - cope with this chronic disease.

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