Getting a diagnosis starts by talking with your doctor. Because hereditary angioedema (HAE) is rare, few people have heard of it, including many doctors. In fact, many doctors will never see a patient with HAE. That's why getting an accurate diagnosis can be challenging.
What to expect at your doctor’s appointment
What to expect at your doctor’s appointment
If your doctor thinks you might have HAE, he or she will likely ask about your symptoms and when you first noticed them. Because HAE is usually passed down through relatives, your doctor will probably also ask if anyone in your family has swelling episodes or has been diagnosed with HAE.
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good to know
You could still have HAE even if no one else in your family has it. One in four HAE cases results from a spontaneous genetic mutation.
Tests to confirm an HAE diagnosis
If your doctor thinks you might have HAE, a blood test is often used to confirm the diagnosis. This measures how much C1-INH protein you have. They will also look at other information, like your symptoms, how they respond to certain medications, and your family history.
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TEST
good to know
You could still have HAE even if no one else in your family has it. One in four HAE cases results from a spontaneous genetic mutation.
discussion guide
If you think you might have HAE, download this discussion guide to record your symptoms and start a conversation with your doctor.
Tests to confirm an HAE diagnosis
If your doctor thinks you might have HAE, a blood test is often used to confirm the diagnosis. This measures how much C1-INH protein you have. They will also look at other information, like your symptoms, how they respond to certain medications, and your family history.
HAE booklet
Do you suspect you, your family member or someone you know has hereditary angioedema? Download this booklet for more information on the disease and how to get diagnosed.