your HAE story

An early diagnosis is key

An accurate diagnosis could take years

If you are not already diagnosed with HAE, it could take up to 11 years before you finally are.

These delays in diagnosis remain because HAE is often mistaken for different conditions.

The earlier HAE can be identified, the sooner you can start your treatment journey to prevent and properly manage future attacks.

How is HAE diagnosed?

Specific tests are required to diagnose HAE

  • MOST cases of angioedema or swelling are NOT HAE, so specific tests are required to confirm a diagnosis.
  • For children of an affected parent, testing can be done at the age of 12 months, with repeat testing at a later age to confirm the diagnosis as early as possible.

HAE in your family

  • The mutation that causes HAE is hereditary, meaning if a parent has HAE, there is a 50% chance they will pass it on to their child.
  • Even without a family history, individuals may still be at risk of having HAE.
    • 25% of cases are caused spontaneously at conception, without a family history.

If a parent has HAE, there is a 50% chance they will pass it on to their child

Take charge of your HAE journey and speak to your doctor about your symptoms and family history. One conversation could help drive the early and accurate diagnosis of this rare disease and set you on the path to a treatment plan that is right for you.