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Take a stand against trade-offs

Living with hereditary angioedema (HAE) often means living with mild attacks and regular accommodations. While current treatment options may have vastly improved life with HAE, many are still impacted by the disease. Many continue to experience attacks, even while on treatment, and nearly everyone faces an emotional or physical toll.

HAE takes a bigger toll than many realize

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89% of people reported they frequently missed or avoided events due to their HAE.*

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73% of people with HAE reported a negative impact on their mental health.*

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60% of people reported that they wished their doctor better understood the daily impact HAE had on their lives.*

With HAE, it can feel like sacrifice isn't optional, it's inevitable. But it doesn't have to be. When you’ve lived through worse, you may accept less. However, tests like the Angioedema Control Test (AECT) can help reveal how your disease control is going.

Take the test below

*Online survey conducted by The Harris Poll of 150 US adults diagnosed with HAE by a health care provider, sponsored by Ionis Pharmaceuticals.

The power in knowing your number

Putting your HAE experience into words can be a challenge. That's where the Angioedema Control Test (AECT) comes in. In a clinical study, this simple, 4-question test reliably identifies both poor and well-controlled disease. The score you get can give you and your doctor a way to assess your disease control.

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Frequency of angioedema (swelling)

In the last 4 weeks, how often have you had angioedema?

The power in knowing your number

Putting your HAE experience into words can be a challenge. That's where the Angioedema Control Test (AECT) comes in. In a clinical study, this simple, 4-question test reliably identifies both poor and well-controlled disease. The score you get can give you and your doctor a way to assess your disease control.

Take test

Want to learn more about the AECT?

Watch this video that explains how taking the AECT regularly can help you monitor your disease control.

This video is the property of the Global Allergy and Asthma Excellence Network. Used with permission. Further distribution requires written approval from The Global Allergy and Asthma Excellence Network. (https://acare-network.com)

People with HAE share their perspectives

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Voices of HAE

"I have to avoid certain activities - like mowing the lawn or carving a pumpkin - to reduce risk of an attack."

— Person living with HAE

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Voices of HAE

"Because of the uncertainty of the disease, my family never took a vacation."

— Person living with HAE

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Voices of HAE

"I was worried to share my condition in my workplace - that they make decisions about my employment because of my healthcare costs."

— Person living with HAE

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Voices of HAE

"You're trading off potential opportunities, experiences, memories for the fear of having an attack - you're always playing this balancing game."

— Person living with HAE

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Voices of HAE

"You're not really thinking about what accommodations you make. You just do it, and you just live with it."

— Person living with HAE

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Voices of HAE

"Growing up, I couldn't do PE class because if a ball hit me, it could trigger an attack."

— Person living with HAE

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Voices of HAE

"I've lost some friendships because they get frustrated with me canceling."

— Person living with HAE

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Voices of HAE

"Travel, even for fun, can be a trigger."

— Person living with HAE

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Voices of HAE

"Living with HAE day to day impacts how you travel, how you interact socially ... it's a disease not many people know about, but it impacts so much."

— Person living with HAE

Help others by sharing your perspective of living with HAE

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