This content is not meant to replace a conversation with a healthcare provider. A healthcare provider can evaluate your symptoms and make appropriate clinical decisions.
This content is not meant to replace a conversation with a healthcare provider. A healthcare provider can evaluate your symptoms and make appropriate clinical decisions.

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For people with HAE Life can be filled with burden

HAE attacks are often disfiguring and debilitating, imposing a significant burden on people’s quality of life

For people with HAE, attacks can affect life in many ways

Emotional burden

How it may feel:

  • Some people with HAE may potentially experience near-constant anxiety about their next attack, causing them to cancel plans
  • They may experience embarrassment and/or feelings of shame in front of friends, co-workers, or strangers
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So if I’m swelling, emotions are heightened, absolutely. There is a sense of panic that occurs during a swell.

Gabby, real person living with HAE

Today’s HAE management may come with trade-offs

Understand the trade-offs

I’m definitely figuring out my own personal triggers. I know that different hormones will trigger my attacks, so we have to be careful, especially when I was doing IVF. We had to take into consideration the estrogen I was exposed to.

— Emma, real person living with HAE

WOMEN AND HAE

The burden of HAE is higher in women, particularly those of childbearing age

Women may be more affected by HAE due to increased estrogen levels and hormonal changes

Adolescents with menstrual disorders are sometimes prescribed oral birth control pills, which can trigger an HAE attack

Changes in female sex hormones—such as those that occur during puberty, menstruation, use of birth control pills, pregnancy, and menopause—can all affect the frequency and severity of HAE attacks

Family planning decisions may be complicated by the impact of certain treatment options

Discover more resources about women and HAE.
Additional information is available at the HAE International (HAEi) or US Hereditary Angioedema Association (HAEA) website.

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Adolescents and HAE A challenging time of life made harder by this unpredictable, disfiguring disease

While the experiences of adults and adolescents with HAE are similar in many ways, there are also unique aspects of being an adolescent with HAE, particularly the impact on schooling as well as social and emotional func­tioning:

  • Signs of HAE usually appear when people are young, either in childhood or as a teenager
  • Attacks may become more frequent and severe during and after puberty

In a study of adolescents aged 12 to 17 with HAE:

  • Some reported feeling different from their peers and said they had missed childhood events such as sleepovers, parties, and spending time with friends
  • HAE attacks caused them to withdraw socially, isolating themselves to avoid potential attacks, or avoiding being seen if they were experiencing swells
  • Some reported feeling self-conscious and experiencing episodes of bullying or teasing due to being different or having a visible swell

Sharing information about HAE

Because HAE is so rare, many people have never heard of it— that means your friends and family may not know the basics.

10 facts about HAE

you can share with the people in your life

01

HAE is a rare disease that causes parts of my body to suddenly swell up

02

These attacks can affect different parts of my body, including my face, arms, hands, legs, feet, genitals, or stomach

03

If an attack affects my throat and prevents me from breathing, it can be life-threatening

04

These attacks may be caused by anxiety, injury, surgical procedures, or other reasons. Attacks can even happen from happy excitement, like a wedding or birthday party. Sometimes, the attacks happen for no known reason

05

About two people in 100,000 have HAE in the United States

06

There are about 7,000 people living with HAE in the United States

07

HAE is typically passed down from parent to child

08

HAE is not contagious, and I cannot pass it on to you

09

The attack from HAE is not the same as swelling from an allergic reaction

10

The medications that treat allergic reactions are not effective in treating an HAE attack. One way of treating an attack is to give myself an injection of a medication prescribed by my healthcare provider

Questions to Ask Your Healthcare provider

It can be helpful to take a list of questions to your healthcare provider’s appointment, so you remember everything you want to discuss. The following are some questions you may want to ask.

  • What type of HAE do I have?
  • How can I avoid having an attack?
  • How can I tell when the worst part of the attack has passed?
  • What are the chances that I will pass this on to my children?
  • Which treatment is right for me?
  • Does it matter if I skip a treatment?
  • I am experiencing side effects. How can I manage them?
  • Are there any current clinical trials, and can I participate?

Track your attacks

Download this app from HAE International (HAEi.org) to:

  • Record your treatment
  • Track attack development and improvements
  • Set reminders for preventive treatment
Download the app

The third-party resource cited above is for the reader’s information only. Pharvaris does not endorse and is not responsible for the content included in this resource.

OR

Tracking your HAE attacks may help you find patterns over time or notice any sudden changes. After you’ve had an attack and treated it, write down the details in a journal. Recording and sharing details of your attacks may allow for improved discussion with your healthcare provider at your next visit.

  • Date of attack
  • Location of swelling (hands, feet, stomach, face, etc)
  • Time and place symptoms began
  • Type of trigger (if known)
  • Attack intensity (low, medium, high)
  • Was this attack similar to or different from past attacks?
  • How long did the attack last?
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Burden of HAE Management

Understand the trade-offs
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Discover helpful resources

Connect with advocacy groups

References

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