Explaining the Invisible: How to Help Loved Ones Understand the Reality of Hereditary Angioedema

Even so, you can prepare loved ones to respond with greater awareness and support by helping them understand HAE.

Explain HAE Using a Relatable Analogy

One way to help someone understand HAE is to use an analogy.

Brenna LaBere, MD, a pediatric allergist and immunologist at Phoenix Children’s in Arizona, suggests comparing the development of HAE swelling to a backyard sprinkler system. The system has a complex pattern of pipes and controls that direct water where it needs to go. If one of those controls doesn’t work properly, water can escape and pool in the surrounding area, she says.

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.

Misunderstanding: HAE Swelling Is Always Visible

“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.

Misunderstanding: Attacks Have Clear Triggers

Misunderstanding: HAE Is Contagious

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

How to Have the Conversation

Talking about HAE before an attack gives you and your loved ones time to ask questions and make a plan without the pressure of an emergency. It also lets you explain what support looks like for you, so they can respond according to what you need at that time.

Choose a Calm Moment

Pick a time when you feel well and neither of you is distracted or rushed. You may open the conversation by saying, “I want to help you understand what happens during an HAE attack and what I may need from you if one occurs,” suggests Hsu Blatman.

Give your loved ones time to ask questions. If they say something that isn’t accurate, remember that they may be trying to connect HAE to something more familiar. Gently correct the misunderstanding and bring the conversation back to your experience, Hsu Blatman says.

Be Specific About the Support You Need

Review Your Emergency Plan Together

Share Reliable Resources

Other helpful resources include:

• HAE International
• American Academy of Allergy, Asthma, and Immunology
• National Organization for Rare Disorders