How to Explain Hereditary Angioedema to Loved Ones

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Clear Up Misunderstandings

As they learn about HAE, loved ones may try to make sense of the condition by comparing it to illnesses they recognize, like seasonal allergies or allergic reactions to certain foods. Addressing a few common misconceptions can help them better understand how the condition affects you.

Misunderstanding: It’s Caused by an Allergy

Almost everyone is familiar with swelling from a typical allergic reaction, so it’s natural for a loved one to assume that’s what’s happening, says LaBere.

She notes that they might ask what you ate, or whether an insect stung you, and well-meaning people may even suggest allergy testing. “An individual with HAE can explain that while the swelling looks similar, it’s not caused by an allergic response, and allergy testing would not be helpful,” she adds.

You may also explain that unlike typical allergic swelling that’s driven by histamine, HAE swelling is driven by excess bradykinin (a substance that makes blood vessels leaky when too much builds up), which can occur when there isn’t enough working C1 inhibitor.

 This means common allergy medications like antihistamines, corticosteroids, and epinephrine, such as EpiPens, don’t work for HAE attacks.

 Instead, you need specialized prescription medications to prevent and treat these attacks.

Misunderstanding: HAE Swelling Is Always Visible

Some HAE symptoms, such as swelling of the face, lips, hands, or feet, are hard to miss. Others, including abdominal episodes, occur inside the body and can cause severe pain with no noticeable signs.

 Nausea, vomiting, or diarrhea can also occur.

“One way to describe it is like a balloon trying to inflate inside their belly or in their throat; even though there’s not enough room, the balloon continues to inflate and create immense amounts of pressure and pain,” says LaBere.

Visible swelling can be misinterpreted, too, says Karen Hsu Blatman, MD, the section chief of allergy and immunology at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and an assistant professor of medicine at the Geisel School of Medicine at Dartmouth. “One of my patients was thought to be a victim of domestic violence when she went to the emergency room for treatment with facial swelling during an attack,” she says.

Describe what your attacks look and feel like to help loved ones recognize what you’re experiencing, even when there aren’t visible signs.

Misunderstanding: It’s Not a Serious Diagnosis

Help your loved ones understand that HAE attacks are more than “just swelling.” Throat swelling can be fatal — it’s a medical emergency that requires immediate care because it can block the airway, LaBere says.

An attack also doesn’t have to affect your throat to be considered serious. Dr. Hsu Blatman recalls caring for a healthcare professional with HAE whose hands were frequently affected during attacks. These symptoms were not life-threatening, but the swelling made it so painful for her to use her hands that she eventually needed to take medical leave from work, she says.

When talking with close friends and relatives, share examples of how attacks affect you. Explain whether swelling can prevent you from using your hands, walking comfortably, eating, driving, or working.

 This can help them understand the seriousness of the condition.

Misunderstanding: Attacks Have Clear Triggers

Loved ones may assume that you can prevent attacks simply by avoiding triggers. Stressful events, fatigue, an infection, physical trauma, and medical or dental procedures are all possible HAE triggers.

But many attacks happen without an apparent trigger, making it difficult to predict when one will occur.

Because an attack can develop with little warning, you may sometimes need to cancel plans, leave functions early, or change course at the last minute.

Let family members and friends know that these changes are about taking care of your health, not a lack of interest in spending time with them, says Hsu Blatman.

Share some of your triggers with the people close to you so they can help you plan around them when possible, without assuming every attack is preventable.

Misunderstanding: HAE Is Contagious

HAE can’t spread from one person to another.

Hsu Blatman suggests saying, “I was born with a genetic change that affects how my body controls swelling. You can’t catch HAE from being around me.”

You may also want to clarify that although HAE often runs in families, not everyone with the condition has a known family history. Sometimes the genetic change occurs spontaneously in a person rather than being inherited from a parent.

 This is called a de novo genetic change.

If relatives have questions about their own risk, encourage them to ask a healthcare professional whether testing is appropriate.