Checking Your Symptoms

Hereditary angioedema (HAE) may mimic other types of medical conditions. For example, it may be mistaken for allergies or stomach problems. However, there are some clues that help physicians identify HAE and distinguish it from other medical problems.

How do you know if you have HAE? Use these tools to check your symptoms:

ABCs of HAE
Eight questions

ABCs of HAE

Again and again

HAE attacks tend to occur again and again. These recurrent attacks may have begun in childhood and may have worsened over the years.

Body part

HAE can occur in different body parts during different attacks. Additionally, swelling can move from one site to another. For example, a facial attack can move to other sites, such as the throat. Physicians refer to these as migratory attacks, and these traveling attacks tend to last several days longer than attacks of edema that affect only one site. Attacks may affect only one side of the body. In allergic reactions, both sides of the body tend to be equally involved.

The most common sites for attacks are:

  • Extremities (hands, feet, arms, legs)
  • Intestines (abdomen)
  • Face
  • Genitals
  • Larynx, or voice box

Conjunctiva

The conjunctiva is the membrane that covers the eyeball and is also found under the surface of the eyelid. In allergic reactions, the eyes tend to be watery and itchy. Although people with HAE may also have allergies, itchy, watery eyes are not a symptom of an HAE attack.

Drugs

Allergic reactions to foods, drugs, or insect bites tend to respond quickly to medications, such as epinephrine and antihistamines. HAE attacks spontaneously improve over time, and it may even initially appear that anti-allergy drugs are effective in HAE attacks. Even if the medications seem to work, they will lack the dramatic response seen in an allergic reaction.

Edema

Although the location of HAE attacks can vary, they always include edema. Doctors call this type of edema non-pitting edema because if you press on the area the skin bounces back and does not leave an indentation or pit.

Family history

Although it is possible to be the first person in your family to have the changed gene that causes HAE, in most cases other family members also have had similar attacks. In a recent survey of people with HAE, about 85% of the respondents were able to identify other family members who had HAE.

Even if no one in your family has been diagnosed with HAE, speak with family members (parents, aunts, uncles, etc.) to see if they have had swelling episodes that sound like they might be related to HAE.

Gastrointestinal surgery

When people with HAE are not properly diagnosed, they may undergo unnecessary abdominal surgeries. Some may have had unnecessary surgeries to remove their appendix or have undergone exploratory laparoscopies (small cameras inserted into the abdomen) in search of a cause for their abdominal pain.

If your symptoms are suspicious, an HAE expert can order the appropriate blood tests to confirm the diagnosis.

Back to Top

Answer eight simple questions to tell the difference between HAE and other conditions

Answer these questions to see if your symptoms fit the profile of HAE:

  • Have you had unexplained attacks of swelling in your hands, feet, arms, legs, face, throat, or genitals?
  • Have these swelling attacks occurred on just one side of your body, for example, just your left hand or just your right foot?
  • Have you had unexplained attacks of abdominal pain?
  • Have these attacks of swelling or abdominal pain occurred more than once?
  • Has anyone in your family had similar episodes of swelling or abdominal pain?
  • Do you sometimes feel warning signs (such as fatigue, tingling, nausea, or flu-like symptoms) that an attack will begin — minutes, hours, or even days before an attack?
  • Have prescription medications, such as antihistamines (e.g., Benadryl®), epinephrine (e.g., EpiPen®), or steroid shots, provided little relief, if any?
  • When you've had these attacks, have your eyes been watery or itchy?

If you answered “yes” to all or nearly all of the first seven questions and “no” to the last question, your symptoms may suggest HAE. You should discuss your medical history with a physician who understands the disease and how to treat it. A blood test can help to confirm the diagnosis.

If you have trouble locating a specialist, you may want to contact the Canadian Hereditary Angioedema Network of physicians. This organization maintains a list of doctors across the country who treat people living with hereditary angioedema.

Back to Top

Sign up now

Register to get the latest updates about AllAboutHAE.ca

Treating HAE

As a person with HAE, you need to recognize the importance of becoming your own advocate, recognizing and monitoring symptoms, learning about treatment, and working with your doctor. Learn more about treating HAE.

Managing HAE

Even though HAE is not a condition that currently has a cure, it can be treated and managed. Find out how most people with HAE live complete, full lives by managing HAE.