Does hereditary angioedema
(HAE) run in families?
HAE is usually in the family tree, which is why the word “hereditary” is used in the name “hereditary angioedema”. If one parent has HAE, each child will have a 50% risk of inheriting the condition. If a child does not inherit the disease from his or her parents, he or she will not pass it on to future generations.
In a survey, HAE patients had an average of 2 immediate and 2 extended family members who had also been diagnosed with HAE.* This means that as a diagnosed patient, you may have family members who also have HAE.
My son also has HAE. He hasn't had his first attack yet, but when he does, it will be very different than mine because we have the HAE community
to walk with us.
Encourage your family members to talk to their doctors about getting tested for HAE
Because HAE is rare, some doctors may not be familiar with the condition. You can help empower your family members to discuss the condition with their doctors and encourage them to get tested. If a family member is interested in finding a doctor who knows about HAE, let them know there are specialists who can help diagnose and treat HAE.
HAE isn’t always inherited
HAE is often passed down from a parent, but that's not always the case. Some people develop HAE because of a spontaneous change in their genetic code, so it can't be traced to the family tree.
*In a global survey of 313 patients.