Understanding HAE

Scott, a real HAE patient,
helps prevent his
attacks with CINRYZE

Diagnostic Process

Because hereditary angioedema (HAE) is rare and under-recognized, the average person with HAE searches for approximately 10 years before receiving an accurate HAE diagnosis. However, if someone else in your family has been diagnosed with HAE, it may be easier for you to receive an accurate diagnosis sooner.

Misdiagnosis is common


In a survey of 313 patients, 65% of participants reported receiving a misdiagnosis before being accurately diagnosed with HAE.

If your doctor suspects HAE, laboratory testing to measure your levels of C4 and C1 esterase inhibitor will likely be the next step. These tests will confirm whether you have Type I or Type II HAE.

Considering preventative therapy

It’s important to work closely with your doctor when creating a treatment plan that’s right for you. Ask your doctor about different treatment options, including preventative and acute therapy.

Preventative treatment is also sometimes referred to as prophylactic therapy and involves taking medicine routinely to help prevent or reduce the frequency and severity of HAE attacks.

When talking with your doctor about whether preventative therapy is an option for you, you might discuss how frequently you experience attacks and how severely they affect you. Your doctor will likely also ask about any other health conditions you might have and if you’ve tried any other methods for coping with or treating your HAE symptoms in the past.

Would you like to get on the path to prevention?

It starts by talking with your doctor. Filling out this Doctor Discussion Guide can help you prepare for your conversation.

Create your discussion guide

Because everyone with HAE is at risk for a throat attack, which can become life threatening because of the potential for suffocation, treatment experts also recommend keeping an acute treatment on hand for HAE attacks. Click here to learn about one option to treat HAE attacks in adults.