What could your next
HAE attack look like?

What are the symptoms of hereditary angioedema (HAE)?

HAE attack symptoms can include random swelling of body parts. They can also be painful and disabling, making it difficult to perform everyday tasks. Cases involving the throat, or airway, account for 0.9% of all HAE attacks. Every person with HAE is at risk for this type of attack, which can become life-threatening. For this reason, many people live in fear of this type of attack.

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

MORE ON THE IMPACT OF HAE

I kept a journal of my HAE symptoms, triggers, and how much my thoughts and worries were impacting my life with family and friends. I showed the journal to my doctor, and we discussed all of it.

Dariela, Living with HAE

Dariela, patient living with HAE.
~54%

In a 2006 study of 201 people with HAE, 54% had experienced a throat attack.

What are the signs of an HAE attack?

Before an HAE attack, some people experience a tingling sensation in the affected area. A non-raised, non-itchy rash before swelling begins is also common. When untreated, the swelling usually increases over a 24-hour period and then gradually subsides during the next 48 to 72 hours. An HAE attack can also start in one location and then spread to another before getting better.

Skin

Photo of the face of a patient before a hereditary angioedema (HAE) attack.
Without an HAE Attack
Photo of a patient during a hereditary angioedema (HAE) attack causing swelling of the face.
During an HAE Attack

Swelling of the skin, or 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

,
,
and don't help reduce the swelling in an HAE attack.

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

Stomach area

Photo of the stomach of a patient before a hereditary angioedema (HAE) attack.
Without an HAE Attack
Photo of a patient during a hereditary angioedema (HAE) attack causing swelling of the stomach.
During an HAE Attack

Swelling in the stomach area, or , 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 who experienced 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, in a 2010 online survey of 313 patients, 19% to 24% of people with HAE reported undergoing unnecessary surgical procedures as a result of misdiagnosed abdominal attacks.

Throat

Photo of the throat of a patient before a hereditary angioedema (HAE) attack.
Without an HAE Attack
Photo of a patient during a hereditary angioedema (HAE) attack causing swelling of the throat.
During an HAE Attack

Swelling in the throat, or a 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.

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

Topics you might like: