Living With HAE

“I encourage you to be the lead in your own life,  to be your best advocate.”

Liz — Diagnosed with HAE in 2013

Discover how others live with HAE

As a patient, you may have spent years trying to understand your symptoms without a diagnosis. Finally getting diagnosed allows you to plan for the road ahead and plan for life with HAE by learning from others' experiences.

Learn from people who have been where you are

“My condition was taking a toll. I dreaded visiting any more doctors because their skeptical looks were hard to bear.”
– Marsha
Diagnosed with HAE in 1989

HAE is rare. As a result, few people have heard of it, including doctors. And because HAE symptoms can look so similar to other conditions, getting an accurate diagnosis can be challenging.

In the past, delays in diagnosis ranged from 10 to 22 years. While delays are still common, 40% of patients are diagnosed within the first 3 years, while 1/3 experience delays of 10 years or more.*

If you think you might have HAE, fill out this Symptom Profiler and take it with you to help start the conversation with your doctor.

*In a survey of 149 patients.

HAE symptom profiler

“I encourage you to talk to your doctors and keep a small log about day-to-day health conditions.”
– Alex
Diagnosed with HAE in 2014

Your HAE symptoms can change over time. Building a strong relationship with your doctor can help you create a management plan that’s based on where you are in your HAE journey.

If you'd like help finding a doctor who has experience diagnosing and treating people with HAE, visit to use their physician referral tool.

HAE doctor

“When a severe facial attack sent me to the emergency room, I saw the fear and uncertainty in the ER doctor's eyes. Since then, I’ve decided to be more proactive about my HAE.”
– Lesa
Diagnosed with HAE in 1980

Because HAE is rare, some doctors may have never heard of it. Have you been diagnosed with HAE? Carrying an HAE ID card can help you be prepared in case of an emergency.

HAE ID card

“My sense of isolation gradually lifted when I was able to connect with other people who had gone through the things I had.”
– Marsha
Diagnosed with HAE in 1989

You don’t have to face life with HAE alone. You can attend conferences, join groups online and start making connections with other members of the HAE community.

HAE community

Hereditary angioedema community

Would you like to connect with other members of the HAE community right now?

“It's important for families to talk about HAE in a more positive way.”
– Alex
Diagnosed with HAE in 2014

If you live with HAE, you might have to explain what it is to your family, friends, coworkers — and doctors. This Digital Awareness Kit can help you have those conversations.

Hereditary angioedema resources

“I travel internationally whenever I can. I just have to do a little more planning and be thoughtful about what I pack.”
– Liz
Diagnosed with HAE in 2013

When you travel, it's a good idea to find the emergency rooms near where you'll be staying. You should also make sure to bring copies of your medical information and any medication you take with you.

HAE physician letter