Discover HAE signs and symptoms
Living with hereditary angioedema (HAE) can be physically and emotionally challenging. HAE can cause attacks of swelling that can be extremely painful, disfiguring and can sometimes make it difficult to perform everyday tasks. In some cases, an HAE attack can even become life threatening. Many people with HAE live in fear of their next attack.
Learning about HAE symptoms and keeping track of your HAE attacks can help you and your doctor create a management plan based on your specific situation.
HAE attacks are unpredictable
HAE symptoms vary greatly from person to person. That means one HAE patient's symptoms could be very different from someone else who has HAE. HAE symptoms can also change within the same person. For instance, the frequency of attacks might increase as a patient enters adolescence.
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. Some people experience attacks that last longer than a week. An HAE attack can also start in one location and then spread to another before getting better.
What are the most common areas affected by HAE attacks?
Also called subcutaneous, these swelling attacks usually affect 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 attacks are commonly misdiagnosed as allergic reactions, but antihistamines, glucocorticoids and epinephrine don't help treat the swelling in an HAE attack.
HAE attacks in the skin often cause temporary disfiguration. The hands and feet are the most common areas affected. 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.
Swelling in the abdomen, or stomach area, is also common. HAE attacks in the abdomen 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.
Before HAE is diagnosed, abdominal attacks can be confused with other medical emergencies and lead to unnecessary surgical procedures. In fact, 19–24% of people with HAE have reported undergoing unnecessary surgical procedures as a result of misdiagnosed abdominal attacks.
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.
Every person with HAE is 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.