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living with HAE

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
  • Travelling or going on vacation
  • Eating certain foods
  • Being physically active

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.

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

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 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 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.

impact questionnaire

Start a discussion with your doctor about how you feel between attacks

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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.

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

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 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 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.

HAE and your family

hereditary angioedema and your family

HAE usually runs in families, which is why it's called "hereditary." If one parent has HAE, each child will have a 50% risk of inheriting the condition. If a child does not inherit the disease, he or she will not pass it on to future generations.

In a survey, people with HAE had an average of 2 immediate and 2 extended family members who had also been diagnosed with HAE.* This means that as a diagnosed patient, you may have family members who also have HAE.

Encourage your family members to talk to their doctor about getting tested for HAE.

Because HAE is rare, some doctors may not be familiar with the condition. You can help empower your family members to discuss the condition with their doctors and encourage them to get tested. If a family member is interested in finding a doctor who knows about HAE, let them know there are experts who can help diagnose and treat HAE.

A parent with HAE has 1 normal gene and 1 HAE gene. Children get 1 gene from each parent, so there is a 50% chance they will inherit the HAE gene

*In a global survey of 313 people with HAE.

support for HAE

support for hereditary angioedema

Whether you live with HAE or you love someone with the condition, talking with other people who understand the challenges you face can be incredibly helpful. Connecting with people in the HAE community can help you discover new resources, build a support network, and find encouragement when you need it.

Talk to your friends and loved ones

Hands

Of course, your health information is a personal matter, but consider telling your close friends, family, and coworkers that you have HAE. Have an open and honest conversation with them so they know how to support you and what steps they should take in case of an emergency.

See how to describe HAE