Symptoms of HAE

Liz
Diagnosed with
HAE in 2013

What are the symptoms of
hereditary angioedema (HAE)?

The symptoms of HAE can include attacks of swelling that can happen anywhere in the body. These episodes can be painful and disabling, and can sometimes make it difficult to perform everyday tasks. In cases involving the throat, or airway, an HAE attack even has the potential to become life-threatening. For this reason, many people with HAE live in fear of this type of attack.

HAE symptoms vary greatly from person to person. HAE symptoms can also change within the same person. For instance, the frequency of attacks might increase as a patient enters adolescence.

My attacks started coming more frequently and strongly. Random parts of my body—including my elbows, feet and forearms—would swell.

LizDiagnosed with
HAE in 2013

What are the signs of an HAE attack?

Before an HAE attack, some people experience a tingling sensation in the affected area. It’s also not uncommon for people to get a non-raised, non-itchy rash before the swelling begins. When untreated, the swelling in an HAE attack usually increases over a 24-hour period and then gradually subsides during the next 48–72 hours. An HAE attack can also start in one location and then spread to another before getting better.

What are the characteristic areas affected by HAE attacks?

Face of an HAE patient without and during a swelling attack.

Skin


Swelling of the skin, or subcutaneous swelling, usually affects the face, hands, feet and genitals. Although subcutaneous swelling can be accompanied by redness, it usually doesn’t itch.

Before HAE is diagnosed, these kinds of swellings are commonly misdiagnosed as allergic reactions, but antihistamines, glucocorticoids and epinephrine don’t help reduce the swelling in an HAE attack.

HAE attacks in the skin often cause temporary disfiguration. In those cases, severe swelling can make it hard to hold anything from a pen to a glass of water or make it difficult to walk.

Abdomen of an HAE patient without and during a swelling attack.

Stomach area


Swelling in the stomach area, or abdomen, is also common. HAE attacks in the abdomen can cause mild to severe pain and be accompanied by vomiting and/or diarrhea but can sometimes occur without apparent swelling. In one study, some patients experiencing untreated abdominal attacks had to stay in bed between 24 and 50 hours.*

Before HAE is diagnosed, abdominal attacks can be confused with other medical emergencies and lead to unnecessary surgical procedures. In fact, 19% to 24% of people with HAE have reported undergoing unnecessary surgical procedures as a result of misdiagnosed abdominal attacks.

*In a survey of 23 patients.
In a 2010 online survey of 313 patients.

Throat of an HAE patient without and during a swelling attack.

Throat


Swelling in the throat, or a laryngeal attack, happens less frequently than skin or abdominal attacks, but it is the most serious. Swelling in the throat can become life-threatening because it can lead to suffocation. If you have an attack affecting the throat, you should seek emergency care right away.

Caution icon

Every person with HAE may be at risk for a laryngeal attack – even if you’ve only had attacks in other areas in the past. So, make sure that you and your friends and family are prepared in case this emergency arises.

of people with HAE experience at least one HAE attack that causes swelling in the throat at some point in their lives.

In a survey of 209 patients.