What HAE means
for families

Does your family have a history with HAE?

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Most people with hereditary angioedema (HAE) have a family history of it, but there are exceptions. Either way, if one parent has HAE, there's a 50% chance that it can be passed down to future generations. The World Allergy Organization recommends that doctors screen all children for pediatric hereditary angioedema with a family history of HAE.

Planning to test your child for HAE?

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Family health history is important in identifying and diagnosing the disease.

FILL OUT MY HAE FAMILY TREE

Challenges of HAE diagnosis in children

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People with HAE can have attacks at any age, but the onset of symptoms typically happens during childhood. Children are especially vulnerable to HAE because of the many challenges in diagnosing pediatric hereditary angioedema.

  • Less severe symptoms that may go unnoticed
  • Misdiagnosis
  • Delayed diagnosis
  • Difficulty explaining symptoms to others

These challenges make testing for HAE so important. Early HAE diagnosis and treatment in children is crucial to helping them manage their HAE.

How HAE can impact children

Being a kid with HAE can be tough. Missing out on sports, sleepovers, field trips, and school days can have a social and academic impact.

The unpredictability of HAE attacks take its toll as well, on both children and their caregivers. Fear of triggering an attack, or worry over leaving a child in someone else's care, can mean making sacrifices that affect the whole family.

As children get older, their HAE attacks may become more frequent and/or severe. Caregivers in particular should be on the lookout for attacks becoming more severe during or after puberty.

Beth, living with HAE and caring for her son who has HAE.

Day-to-day life with HAE

People with HAE have reported that symptoms can interfere with many aspects of life.

>50%

More than half of adults in a study of 450 felt that missing out on school as a child due to HAE attacks impacted education choices later in life.

53%

In a survey of 30 caregivers of adults and children with HAE, 53% agreed that HAE impaired patients' everyday activities to some extent.

52%

In the same survey, 52% of adults and children they care for agreed that patients avoided social activities because of HAE.

Support for caregivers of children with HAE

HAE diagnosis, management, and treatment may be a lot to think about. But don't worry, there's help out there for you. If you have questions, speak with the doctor first.

If you need general information or tips the US Hereditary Angioedema Association (HAEA) has a wealth of information on managing HAE in children, including these tips for parents:

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Explore resources

Check out the HAE Family Brochure to discover more details about the genetics of HAE, testing, diagnosis, and more.

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Create an HAE management plan

Work with your child's doctor to create an individualized management plan.

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Educate

Take time to speak with everyone involved in your child's care—teachers, gym teachers, sports coaches, school nurses, babysitters, etc—so they understand how your child may be affected by HAE.

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Set up an emergency plan

An emergency plan tells you and anyone else who takes care of your child what steps need to be followed when he or she has an HAE attack. Work with your child's doctor to create your emergency plan and share it with your child and the important people in his or her life.

The HAEA has more to offer families living with HAE, including connections to youth outreach programs, physician referrals, and educational resources.

VISIT haea.org

I have HAE myself. I experienced everything my son Andrew would go on to fight through, but it was just so much harder watching him.
I overlooked so many things about what it would be like to care for a child.

Beth, Living with HAE and caring for her son who has HAE

Beth, living with HAE and caring for her son who has HAE.
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