My child has HAE

– learn to be your child’s HAE advocate!

HAE is passed on in families and a child has a 50 percent chance of inheriting the disease from his/her parent. The absence of a family history does not rule out the HAE diagnosis, however.

The good news is that today there are therapies available to help your child live a normal life.

When your child has HAE

  • Learn all that you can about HAE
  • Develop an individualized treatment plan in partnership with an HAE knowledgeable physician
  • Inform people at your child’s school, extracurricular activities, and even babysitters
  • Put an emergency plan in place – just in case
  • Have confidence that kids and teens with HAE can live a healthy, normal life
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    Parents play an important part and should take an active role as caregivers. Don’t walk into your child’s physician’s office with a stack of pages printed off the Internet, but be ready to speak knowledgeably. Information on the various types of angioedema, disease symptoms and triggers, current treatments, and are available on this web site. Visit all of the web site pages to be sure you are well-versed in HAE facts.

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    Create a plan

    It is important for parents or legal guardians to work with their child’s physician to create an individualized HAE treatment plan. There are treatments approved by the FDA for children as young as 12 years old – these and any other options should be discussed in-depth with your child’s physician.

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    Take time to speak with everyone involved in your child’s care – teachers, gym teachers, school nurses, sports coaches, field trip chaperones, and babysitters. Direct them to this web site or print out information about HAE for them to read on their own:

    ‘What is HAE?’ brochure

    Have a look at – and make use of – our school resources

    Read more here: ‘Study and Worklife’

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    Set up an emergency plan

    It’s imperative that everyone involved in your child’s care knows your plan for an HAE emergency, if you are not there. Prepare and provide a concise informational packet with everything needed to take care of your child in an HAE emergency, including information on your child’s current therapy, your wishes for how and where your child should receive treatment, and your best contact information. If you’re traveling with your child, make sure you know where the nearest emergency medical facility is located – your HAEA Patient Services Team member can help you with this.

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    We live in a time when HAE treatment is available to help your child lead a normal and healthy life. Cheer them on – encourage them! With a uniquely tailored HAE treatment plan, kids can participate in sports, extracurricular activities, head off to college – enjoy life to the fullest!

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All Patient Advocates are either patients themselves or caregivers for HAE patients.

We understand what it means to live with HAE and provide a wide range of services to HAE patients and their families.

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