HAE and Children

Can my children get HAE?
Yes, the gene defect that causes HAE can be handed down in families – inherited.

There are about 25% of people with HAE who have no family history of the disease, because the gene became defective spontaneously when they were conceived.

Regardless of how you got the genetic defect, each child of a parent with HAE has a 50-50 chance of inheriting the disease. A person cannot be a “carrier” of the HAE gene – you either have HAE or you do not. And HAE does not skip generation. If you do not have HAE, your children will not inherit HAE.

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    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.

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    At what age do attacks of Hereditary Angioedema 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.

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    What treatments are available for children who have Hereditary Angioedema?

    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.

    Read more about treatments for children

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    HAEA Patient Advocates Team

    HAE therapies provide an opportunity for HAE patients to lead a healthy life.
    US HAEA Patient Advocates Team members are available to provide information to help you and your physician choose a therapeutic approach that best fits your individual treatment needs

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