Life is more than attacks

Living with hereditary angioedema (HAE) often means living with mild attacks and regular accommodations. While treatment options may have vastly improved life with HAE, most people are still impacted by the disease – many still experience attacks, even when on treatment, and nearly everyone feels an emotional or physical toll.

Have you ever:

Canceled plans
with friends?

Avoided committing
to an event?

Passed on a job
opportunity?

Avoided a vacation
based on the fear of an attack?

Felt anxious worrying
about a possible attack?

While adapting life to HAE can become second nature, it can also be frustrating and exhausting. Luckily, there are resources that may help.

The first step

The HAEVN Self-Reflection Tool helps take a closer look at the impact HAE has on your overall wellness, including your social life, work or school, physical activity, and mental health.

Along with your customized report, you'll also hear stories from others in the community with similar experiences and find supportive resources based on your selections.

GET STARTED

Daily accommodations

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

— Person living with HAE

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

— Person living with HAE

“I was worried to share my condition in my workplace – that they’d make decisions about my employment because of my healthcare costs.”

— Person living with 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

“You’re not really thinking about what accommodations you make. You just do it, and you just live with it.”

— Person living with HAE

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

— Person living with HAE

“I’ve lost some friendships because they get frustrated with me canceling.”

— Person living with HAE

“Travel, even for fun, can be a trigger.”

— Person living with 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

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