This website is intended for users outside of the US and UK.

living with hereditary angioedema

 

Living with hereditary angioedema (HAE) isn’t always easy. An HAE attack can be more than an interruption in your daily routine. It can be physically and emotionally painful, sometimes scary, and even life threatening.

 

Like some people with HAE, you may find yourself worrying about when your next attack will be. This may cause you to avoid things others may take for granted, like:

  • Making plans

  • Traveling or going on vacation

  • Eating certain foods

  • Being physically active

spotblock image good to know

There’s hope if you’re facing these setbacks. Talk to your healthcare provider about how to address the impact of your HAE.

spotblock image impact questionnaire

Does HAE impact you between attacks? This questionnaire can help you talk to your doctor about how you feel.

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Hear from others with HAE:

Kathrin speaks about how HAE affected her career choices.

Patricia speaks about the daily impact of HAE.

 

Woman thinking about the emotional impact of
hereditary angioedema

 

 

Whether you have frequent attacks, or one every few months, the negative effects of HAE can be felt even after the physical swelling and pain from an attack have gone away.

emotional impact of HAE

It is normal to feel sad and worried sometimes. But did you know people with HAE have higher rates of anxiety and depression?

In a global study, people with HAE were 3 times more likely to have depression, and 10 times more likely to have anxiety compared with the general population.

Reasons for anxiety revolved around:

  • Fear of the next attack, including a serious attack in the throat
  • Travelling far from home
  • Perceived burden on care partners, friends, and family
  • Passing HAE on to children

impact of HAE on school and work

Nearly half of respondents reported in a European survey that their HAE had held them back at school or work.

It goes beyond just being absent during attacks. In a separate study, some people with HAE reported that they experienced:

  • Career choices often being limited to part-time opportunities
  • Reduced productivity and absence from work
  • Perceived lack of understanding or support in the workplace
  • Setbacks in their career
  • Fear of losing their job

This impact increases with more frequent attacks.

impact of HAE on your social life

If you’re worrying about your next attack, you may not commit to doing things with your family and friends—like taking a trip or hosting a dinner party. After all, if you don’t make plans in the first place, then you avoid the risk of needing to cancel them.

But, like many people with HAE, this can result in you feeling socially isolated from family, friends, care partners, and employers. This can make the cycle of anxiety and depression worse.

This website is intended for users outside of the US and UK.