HAE is rare so many doctors will never see a patient with HAE, which can lead to delayed diagnosis or misdiagnosis for some patients. HAE symptoms are often mistaken for other things, such as allergies, appendicitis, or gastrointestinal problems.
HAE is usually passed down through families, so your doctor will likely ask if anyone else in your family has been diagnosed.
To know for certain if you have HAE, your doctor may also perform a blood test to measure protein levels. Measuring levels of the proteins C4 and C1-INH will not only help determine if you have HAE, but will also help identify the type.
Current 2020 guidelines from the US Hereditary Angioedema Association (HAEA) recommend that people with HAE have at least 2 doses of an acute therapy, such as FIRAZYR, on hand for immediate use in the case of an acute attack. The guidelines recommend that acute therapy of an HAE attack be self-administered (or administered by a caregiver) as soon as symptoms begin, no matter where the swelling occurs or how severe it is.