HAE & Children

The gene defect that causes HAE is hereditary. Children of parents with HAE have a 50/50 chance of inheriting the disease if one parent has HAE. A person cannot be a “carrier” of the HAE gene. HAE does not skip generations, which means that the children of non-patients will not inherit the disease. For the most reliable test result, children should be at least one year old for C1-Inhibitor testing.

It is important to note that 25% of HAE patients do NOT have a family history of the disease. This means that the gene became spontaneously defective during conception. These HAE patients can pass on HAE to their children.

At what age do HAE attacks start?

The age of HAE onset varies considerably, however, in one study, half of the patients reported onset of their symptoms by the age of seven, and over two thirds became symptomatic by the age of thirteen. There also seems to be an increased frequency of attacks during puberty or adolescence.

At what age should I have my child tested?

HAE physician experts recommend waiting until a child is at least 1 year old before testing C1-Inhibitor levels.

What treatments are available for children with HAE?

One of the available HAE therapies may be an appropriate choice for use with children. Parents should work with their child’s HAE physician expert to create an individualized treatment plan for each child.

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