This website is intended for US residents.

Sign up for updates about EKTERLY.

Stay connected

HAE Explained

What is HAE?

Hereditary angioedema (HAE) is a rare genetic condition that causes recurring attacks of swelling in different parts of the body.

Swelling from HAE can occur in the:

Locations of HAE attacks on the body
  • Lightning bolt

    HAE ATTACKS ARE UNIQUE to each person. Sometimes, the attacks are triggered by stress or physical trauma, but swelling often occurs without a known trigger.

  • HAE attacks are unpredictable

    HAE ATTACKS CAN PERSIST.
    Even with preventative treatment, people with HAE may still experience HAE attacks.

  • Sneaker

    HAE ATTACKS DISRUPT DAILY ACTIVITIES and can cause people to change their lifestyle to try to manage them.

What are the symptoms of an HAE attack?

While HAE attacks are unpredictable and vary from person to person, there are some common early signs to look out for, including*:

  • Tightness
  • Swelling
  • Non-itchy rash
  • Unwell feeling
  • Pressure
  • Pain or ache
  • Tingling
  • Fatigue

*Exact locations not specified.

About

6,000-7,000

people in the US live with HAE

About 6,000-7,000 people in the US live with HAE

About50%
of people with HAE have their first attack

About 50% of people with HAE have their first attack by age 10

by age 10

What causes HAE?

HAE is often caused by a genetic defect that leads to problems with a plasma protein called the
C1-inhibitor (C1-INH). For most people living with HAE, C1-INH is either missing or not working properly.
In some cases, though, HAE can occur in people with normal C1-INH levels.

Is HAE passed down through families?

HAE is usually inherited, but it can also occur due to a random genetic mutation.

  • 25%
    of HAE is caused by a random genetic mutation

    75%
    of HAE is inherited

  • If 1 parent has HAE and the other doesn’t, each of their children has a
    50% risk
    of inheriting this condition

Types of HAE

There are 3 recognized forms of HAE, but type I and II are the most common types.

  • TYPE I

    • Low levels of C1-INH
    • Genetic
    • Accounts for ~85% of people with HAE

  • TYPE II

    • Normal levels of C1-INH, but the protein doesn’t function properly
    • Genetic
    • Accounts for ~15% of people with HAE

  • HAE with normal
    C1-inhibitor

    • Normal levels and normal function
      of C1-INH
    • Very rare
Hypothetical EKTERLY® (sebetralstat) patient in an outside setting Hypothetical EKTERLY® (sebetralstat) patient in an outside setting Actor portrayal
UP NEXT:
Managing HAE AttacksRight arrow

INDICATION AND IMPORTANT SAFETY INFORMATION

WHAT IS EKTERLY® (sebetralstat)?

EKTERLY is a prescription medicine used to treat sudden (acute) attacks of hereditary angioedema (HAE) in adults and children aged 12 years of age and older. It is not known if EKTERLY is safe and effective in children under 12 years of age.

IMPORTANT SAFETY INFORMATION

Before taking EKTERLY, tell your healthcare provider about all of your medical conditions, including if you:

  • Are pregnant or planning to become pregnant. It is not known if EKTERLY can harm your unborn baby.
  • Are breastfeeding or plan to breastfeed. It is not known if EKTERLY passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby while taking EKTERLY.
  • Have liver problems.

Tell your healthcare provider about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking EKTERLY with certain other medicines can cause side effects or affect how well EKTERLY or the other medicines work. Especially tell your healthcare provider if you take any of the following, as their use with EKTERLY is not recommended: itraconazole, phenytoin, efavirenz.

Know the medicines you take. Keep a list of them to show your healthcare provider or pharmacist when you get a new medicine.

What are the possible side effects of EKTERLY?

The most common side effects of EKTERLY include headache. For more information, ask your healthcare provider or pharmacist. Talk to your doctor for medical advice about side effects.

You are encouraged to report side effects related to KalVista products by calling 1-855-258-4782. If you prefer, you may contact the U.S. Food and Drug Administration (FDA) directly. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please click here for full Prescribing Information, including Patient Information.