Understanding the impact of hereditary angioedema (HAE)
Living with HAE often means living with the burden of unpredictable attacks. 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 others realize
89% of patients said they frequently missed or avoided events due to their HAE.*
Nearly 73% of people with HAE reported a negative impact on their mental health.*
60% of people reported that they wished their doctor better understood the daily impact HAE had on their lives.*
Online survey conducted by The Harris Poll of 150 US adults diagnosed with HAE by a health care provider, sponsored by Ionis Pharmaceuticals.
†The AECT was validated in 81 patients with recurrent angioedema, including 25 with HAE or acquired angioedema due to C1-inhibitor deficiency. It was not specifically validated for HAE.
Talking about HAE with others
Try these tips when discussing HAE with family, friends, coworkers, and more.
Explaining HAE to others
Stay focused
Don’t feel the need to provide a lot of detail about your personal experiences. Instead, talk about how HAE may impact your life in general.
Use real examples
Sharing specific examples can help others understand how HAE may affect your life. For example, do you avoid certain activities that may trigger an attack?
Navigating conversations at school or work
Plan ahead
If you choose to share information about the impact of HAE on your life, you may ask for considerations, such as additional sick days. Prepare suggestions to help address anticipated barriers, such as job sharing or working from home.
Find support
Consider confiding in someone you trust at work or school if you haven’t already. It can help to have someone there who supports you.
Advocating for your needs
Be direct
It’s natural to avoid uncomfortable conversations, but being open about your needs can help others better understand how HAE affects you. This can make it easier for them to offer emotional support or help you navigate day-to-day challenges.
Be clear about how others can help
Remember that you are your best advocate. Others can provide more support when they understand what you need.
Building a support network
Make the connection
Family and friends want to feel useful, so don’t be afraid to ask for help or favors. Let the other person know ahead of time what you’d like to talk about, so they’re not caught off guard.
Practice active listening
Use active listening to better understand how others might be feeling about what you’re sharing. This can include nodding, asking questions, empathizing with their perspective, and paraphrasing what you hear back to them.
Participating in everyday activities
Put yourself first
Take time for yourself so you’ll feel recharged and energized. Remember that your priorities are just as important as others' and that prioritizing your needs isn't selfish.
Play to your strengths
Share suggestions that work within your lifestyle with HAE.
Find inspiration with HAEVN Spark
Even though it may feel like it sometimes, you are not alone in your experiences. Hear from others with HAE or get a little pick-me-up by telling HAEVN Spark how you’re feeling for today.