Typically, in people with HAE, this is what is happening: 1. A protein in the blood called C1-inhibitor is missing or doesn’t work properly. 2. This causes another protein (called kallikrein) to become overactive. 3. Increased kallikrein activity produces too much bradykinin. 4. Bradykinin makes it easier for fluid to pass through blood vessel walls. So, this leads to HAE attacks.

There are two main types of HAE treatment: Preventive (also known as prophylactic) HAE treatment involves taking medicine routinely to help prevent or reduce the frequency and severity of HAE attacks. On-demand HAE treatment is medicine used to treat the symptoms of an HAE attack. TAKHZYRO is not an on-demand treatment

What is HAE?

Hereditary angioedema (HAE)
is a rare genetic disease

HAE can cause repeated attacks of swelling that can be painful, unpredictable, and debilitating. They can be different for each individual and can also change over time. These attacks can occur in different parts of the body, including the face, hands, feet, and even the throat, which can become life-threatening. HAE is called "hereditary" because it usually runs in families.

Soraya

What causes HAE?

Typically, in people with HAE, this is what is happening:

1. A protein in the blood called C1-inhibitor is missing or doesn’t work properly.
2. This causes another protein (called kallikrein) to become overactive.
3. Increased kallikrein activity produces too much bradykinin.
4. Bradykinin makes it easier for fluid to pass through blood vessel walls. So, this leads to HAE attacks.

TAKHZYRO helps by decreasing kallikrein activity.
See how TAKZHYRO works.

How is HAE diagnosed?

For people who have a family member with HAE, getting a diagnosis can be pretty straightforward. For people who have never heard of HAE, getting a diagnosis can be more difficult.

It can help to know what HAE is, what symptoms to be on the lookout for and what kind of doctor can help with a diagnosis. The US Hereditary Angioedema Association can help you find an HAE specialist.

To know for certain that you have HAE, a blood test is recommended. Your doctor will measure your levels of the proteins C4 and C1 esterase inhibitor. Testing can also help to differentiate between HAE Type I and HAE Type II.

Understanding HAE Type I and II

Most people with HAE (about 85%) have HAE Type I. Some patients with HAE (about 15%) have HAE Type II. Doctors need a blood test to show whether a patient has HAE Type I or Type II because they can look very similar to one another. They both cause swelling attacks in different locations throughout the body, and both types occur because of a genetic mutation.

Type I

Low level of C1-INH
C1-INH functions normally
Most common (~85% of people with HAE)

Type II

Normal level of C1-INH
C1-INH doesn't function normally
Less common (~15% of people with HAE)

What are the challenges in diagnosis?

ONLY

25^%

diagnosed
within 1 year*

47^%

undiagnosed
for 10 or more years*

*According to a 2015 survey of 106 people with HAE Type I or II

It's thought that approximately 1 in 50,000 people in the world have HAE. And it’s estimated that about 6,000 people have HAE in the United States. HAE is rare, and many doctors may never encounter a patient with HAE. However, there is a need for more members of the medical community to learn how to recognize, diagnose, and treat it.

It's not unusual for people with HAE to experience symptoms for years before they see a doctor who makes an HAE diagnosis. In 2017, a survey of 445 people with HAE showed the average delay in diagnoses was 8.4 years.

Can HAE be misdiagnosed?

Because HAE symptoms can look very similar to the symptoms of other, more common conditions, it can be easy to misdiagnose. In a 2010 survey of 313 people with HAE, up to 65% of the participants had been misdiagnosed with another condition prior to receiving their HAE diagnosis:

Most commonly, skin attacks were mistaken for other skin conditions, like contact dermatitis, which can cause the skin to become irritated and swollen
Abdominal attacks were also confused with appendicitis or irritable bowel syndrome

What can getting misdiagnosed with another condition mean?

It can take longer to get an accurate HAE diagnosis
People who are undiagnosed are at greater risk of receiving the wrong treatment
In an emergency situation, like an HAE attack affecting the airway, getting the wrong treatment has the potential to be life-threatening

Additional questions you may have

How is HAE treated?

There are two main types of HAE treatment:

Preventive (also known as prophylactic) HAE treatment involves taking medicine routinely to help prevent or reduce the frequency and severity of HAE attacks
On-demand HAE treatment is medicine used to treat the symptoms of an HAE attack. TAKHZYRO is not an on-demand treatment

Talk to your doctor about your options and learn more about treatment types here.

Are all HAE attacks the same?

No two people’s experiences with HAE are the same, and an individual’s own HAE attacks can be different from one attack to the next. It’s also important to know that attacks can change over time, and past attacks do not predict future attacks or whether the airway may be the site of a future HAE attack.

Help prevent attacks before they happen.† Consider preventive treatment with TAKHZYRO.

TAKHZYRO is recommended by the 2020 US Hereditary Angioedema Association (HAEA) guidelines as one of the first-line treatments for long-term prevention of HAE attacks. The 2020 US HAEA guidelines include a consideration of long term preventive treatment for all HAE patients.

Ask your doctor if TAKHZYRO should be considered as part of your long-term HAE management plan.

†Evaluated in a 6.5-month study and a 2.5-year open-label extension study, TAKHZYRO helped reduce HAE attacks.

TAKHZYRO was studied to see if it could help prevent HAE attacks.

See the study

Learn about HAE symptoms and attack triggers.

More HAE Info