HAE and children

The gene defect that causes HAE is hereditary. Children of a parent with HAE have a 50% chance of inheriting the condition.

TESTING IS KEY

Once an individual is diagnosed, experts recommend that all immediate family members (parents, siblings, and children) are tested for HAE. Testing for HAE is possible within the first year of life however, some physicians recommend that you wait until a baby is at least one (1) year old before testing. This is due to highly variable C1 antigenic and C4 levels in the first year of life. Early testing allows parents or legal guardians to work in advance with their child’s physician to create an individualized treatment plan.

ONSET OF HAE SYMPTOMS IN CHILDREN VARY

The age of HAE onset varies considerably, however, studies suggest that 50% of people with HAE report their first symptoms by the age of 10 and most people have experienced symptoms/ their first attack before age 18. There also seems to be an increased frequency of attacks during puberty or adolescence.

Treatment of HAE in children

Similar to adults, all pediatric HAE patients should develop an HAE management plan including a treatment action plan with their physician. 

HAE (Type I and II) therapies licensed for children or adolescents vary from country to country as specific treatments are not licensed in all countries. 

>> Read more about treatment of HAE in children

HAE related topics that might interest you

Global Perspectives

Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community

HAEi Advocacy Academy

Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate

HAEi Connect Member database

Free, secure online membership database and communications platform for HAEi’s member organizations

HAE Companion app

Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians

Stay tuned – sign up for our newsletter

BE THE FIRST TO KNOW ABOUT HAE NEWS, TREATMENTS, EVENTS AND RELATED TOPICS

HAEi hosted websites

Hosting of your national website or help for you to create a new website – naturally all in your native language

HAE TrackR app

Easy-to-use electronic diary of HAE treatments (preventative and on-demand), HAE attacks, and the impact HAE has on life