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