Understanding HAE

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Hereditary Angioedema (HAE) Symptoms & Triggers

Living with HAE isn’t always easy, but learning about the symptoms of HAE and keeping track of HAE attacks can help create a more informed treatment plan with your doctor.

HAE symptoms

HAE symptoms can be very different from person to person. That means one person with HAE could experience symptoms with greater severity and frequency, or in different locations than someone else who also has HAE. Common symptoms include unexplained swelling in any part of the body, most often in the abdomen, face, feet, genitals, hands or throat.

Since patients often present HAE symptoms in childhood, it’s important to help identify and track episodes to discuss with your child’s doctor.

HAE symptoms can also change within the same person. For example, some women with HAE experience a shift in the frequency of their HAE attacks during various life stages, such as puberty, pregnancy or menopause. Patients with early-onset HAE tend to be more likely to suffer from a severe course of disease.

Common areas affected by HAE attacks


Face without a hereditary angioedema (HAE) attack

Before

Face swelling during a hereditary angioedema (HAE) attack

During

Skin, or subcutaneous
Swelling of the skin usually affects the face, hands, feet or genitals. These attacks can be temporarily disfiguring and disabling and get in the way of everyday activities. These swelling attacks may be accompanied by redness, but the area usually doesn't itch. Before HAE is diagnosed, skin attacks are commonly misdiagnosed as allergic reactions.

Stomach without a hereditary angioedema (HAE) attack

Before

Stomach swelling during a hereditary angioedema (HAE) attack

During

Stomach, or abdomen
HAE attacks in this area can cause mild to severe pain and be accompanied by vomiting and/or diarrhea. In one study, some patients experiencing untreated abdominal attacks had to stay in bed between 24 and 50 hours. In a 2010 online survey of 313 people, 19% reported undergoing unnecessary surgical procedures due to misdiagnosis.

Throat without a hereditary angioedema (HAE) or laryngeal attack

Before

Throat swelling during a hereditary angioedema (HAE) or laryngeal attack

During

Throat, or larynx
An attack that causes swelling in the throat, also called a laryngeal attack, can be frightening. Swelling in the throat can interfere with breathing, creating a potentially life-threatening situation. While laryngeal attacks occur less frequently than other types of attacks, they are the most serious. If you experience an HAE attack affecting your airway, seek emergency treatment as soon as possible.

Treatment guidelines recommend all HAE patients have an acute treatment option available in the event an HAE attack occurs. Click here to learn more about one option to treat HAE attacks in adults.

On average, an untreated patient will experience 2 to 4 attacks each month. Take your first step toward learning more about preventive therapy by talking with your doctor.

Download the doctor discussion guide

Triggers of an HAE attack

In both children and adults, most HAE attacks occur without any warning. Yet some patients have been able to identify triggers that seem to set off their attacks. These triggers can vary from person to person and can be particularly difficult for children to identify or describe to their caregivers, such as:

  • Emotional stress
  • Injury
  • Infection
  • Dental procedures or tonsillectomy
  • Hormonal influences, like menstruation
  • Mechanical pressure from physical activities, like typing or mowing the lawn

It’s important to recognize what types of activities and situations may lead to you or your child’s attacks. Keeping a journal of these episodes may help better communicate symptoms and triggers to your doctor.

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