What is HAE?
Hereditary angioedema (HAE)
is a rare genetic disease
HAE can cause repeated attacks of swelling that can be painful, unpredictable, and debilitating. They can occur unexpectedly in different parts of the body, including the face, hands, feet, and even the throat, which can become life-threatening. These attacks can be different for each individual and can also change over time.
If you have HAE, you may find yourself going out of your way to avoid certain activities—just so you don't trigger an attack. This can include eating certain foods or avoiding stressful situations.
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How is HAE diagnosed?
For people who have a family member with HAE, getting a diagnosis can be pretty straightforward. For people who have never heard of HAE, getting an HAE diagnosis can be more difficult.
It can help to know what HAE is, what symptoms to be on the lookout for, and what kind of doctor can help with getting an HAE diagnosis. The US Hereditary Angioedema Association can help you find an HAE specialist.
To know for certain that you have HAE, a blood test is recommended. Your doctor will measure your levels of the proteins C4 and C1 esterase inhibitor. Testing can also help to differentiate between HAE Type I and HAE Type II.
Are all HAE attacks the same?
If you're living with HAE, your experience won't be the same as someone else's. The things you avoid that can trigger an attack may be different from the things other people with HAE avoid. Your attacks may even change from one attack to the next. It’s also important to know that attacks can change over time, and past attacks do not predict future attacks or whether the airway may be the site of a future HAE attack. Even if you feel your HAE attacks are typically mild, you could have a more severe attack at any time.
Keeping a journal of your HAE attacks will help both you and your doctor see changes that occur in your HAE attacks. Record things like the frequency and severity of your attacks, and bring this information to your next appointment.
