What Are the Signs and Symptoms of Hereditary Angioedema?
Hereditary angioedema (HAE) attacks cause swelling in different parts of your body.
These attacks are often painful, unpredictable, and disfiguring. They can interfere with your everyday life, and in some cases they can cause a medical emergency.
It’s important to recognize the first signs of an HAE attack, so you can seek prompt treatment, notes the U.S. Hereditary Angioedema Association. (1)
Swelling is the common theme in all HAE episodes. But different parts of your body may be affected. Your signs and symptoms might depend on the type of attack you have.
These attacks affect areas of the skin, usually on the face, hands, feet, or genitals.
Your skin will swell and may turn red, but it usually doesn’t itch.
Sometimes a skin attack causes temporary disfigurement.
The swelling can make it hard to perform simple activities, such as walking or holding a pen.
Subcutaneous attacks are often mistaken for allergic reactions. (1,2)
As the name suggests, abdominal attacks involve swelling in the intestinal wall that can lead to stomach pain.
Other symptoms of an abdominal attack include:
The pain can be debilitating. In one study, people who had untreated abdominal attacks had to stay in bed between 24 and 50 hours. (2)
Sometimes you can actually see your stomach area swell, but not always.
Abdominal attacks are often misdiagnosed as other medical problems, such as appendicitis or irritable bowel syndrome (IBS). Many people undergo unnecessary procedures because of the rarity of HAE. (1,2)
A laryngeal attack involves swelling in your throat. These attacks happen less often than skin or abdominal attacks, but they’re the most serious.
Swelling in the throat or tongue can stop air from getting in and lead to suffocation. You may experience:
This type of attack is considered life-threatening and requires emergency medical care. Without treatment, studies show death rates from a laryngeal edema episode can be as high as 30 percent. (1)
More than one-half of people with HAE will have at least one laryngeal attack in their lifetime. (1) You can have this type of attack at any time, even if you’ve never had one before.
It’s a good idea to make sure your family members, coworkers, and friends know what to do if you experience swelling in your throat. (1,2,3)
Related: Abdominal Pain: Is It Appendicitis or Something Else?
Some general symptoms associated with HAE include: (4)
About 25 percent of people with HAE also have a non-itchy rash that happens before or during an attack. (1)
Sometimes an HAE attack can start in one location of the body and then spread to another area. (2)
Related: 8 Foods That Trigger Headaches
Some people with HAE say they notice early warning signs that crop up right before an attack starts. These indicators can alert you that an episode is coming, and they may include: (5)
Symptoms of HAE happen because too much fluid accumulates in your body’s tissues.
With most types of HAE, your body doesn’t make enough of a special protein called C1 inhibitor, or the protein it does make doesn’t work properly. This sparks a cascade of events that ultimately leads to swelling.
Many times, HAE attacks occur without warning. But some people notice triggers that can forecast a swelling episode. Some people with HAE find it helpful to keep a written log of their symptoms and triggers. This may help you predict when your next episode will occur. (1)
Related: What to Do if You Have Edema
HAE usually starts in childhood and may worsen after puberty.
Research suggests that 50 percent of people with HAE report their first symptoms by age 7. More than 66 percent have symptoms by age 13.
Some people with a very rare form of the disease, known as type 3 HAE, may not have symptoms until they become adults. (1)
HAE attacks can be painful, unpredictable, and frustrating. You may have to temporarily give up the activities you enjoy.
Follow your doctor’s instructions on how to treat your symptoms. If you experience signs of a throat attack, seek emergency medical help right away.
Several treatments are now available that can prevent attacks. Ask your physician if they may be safe and effective for you. (7) Be sure to have your on-demand treatment with you at all times, as you never know when an attack will happen
Additionally, lowering stress levels and adopting a healthy lifestyle can help you deal with symptoms. You might want to try yoga, meditation, or deep breathing exercises to reduce stress. Eating healthy foods, exercising to your ability, and getting enough rest every night can be beneficial.
If you have HAE, a good support system is also important. You might want to designate someone to take you to doctor’s visits regularly. Many people also join online support groups to connect with others. (2,8)
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