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Parenting children with a rare condition like Hereditary Angioedema (HAE) involves special challenges and considerations to ensure your child is set up for success.
It is normal for parents to feel overwhelmed when their child is diagnosed with HAE. In addition, because HAE is extremely rare and most physicians will never encounter it, parents can feel frustrated that the pediatrician exhibits little knowledge of the condition.
Many parents worry about how to effectively manage their child's HAE when their child is away from them, while at school, or playing sports. Some also struggle to gain access to the healthcare that their child needs. Beyond managing the logistics of care, the emotional burden due to the uncertainty of the condition can also impact parents of children with HAE. It might be hard to find people who understand or can relate to what they are going through, and parents may consequently feel isolated, lonely, stressed, or guilty – especially given the hereditary nature of HAE.
Navigating this diagnosis and finding the right support for you and your child can seem daunting, but the US HAEA is here to help!
You are not alone! The US HAEA's community includes many other caregivers like you who are experiencing the same challenges. We are always here for you to answer questions, offer kind and compassionate support, and provide resources to help with every step of your HAE journey. Additionally, we have many tools and resources to help parents better understand HAE. These include how to navigate being a caregiver, optimize communication with your medical team, anticipate challenges, and successfully manage your child's HAE.
Become a member of the HAEA and receive current scientific information on HAE and FDA-approved HAE treatments. It's free and your privacy is protected.Join Us
In this nationwide research project driven by HAEA community members, people living with HAE can track and submit information about HAE attacks, symptoms, and therapies. This data is confidential and is the driving force behind new HAE research and discoveries.LEARN MORE
HAE Advocates help with physician referrals, peer-to-peer support, guidance on access and reimbursement for HAE medicines, and more. We provide a wide range of personalized services for people with HAE and their families – we are here for you!CONTACT US
The HAEA Member Kit is a tool that serves as a personalized guide for HAEA members. By taking a brief quiz, we will compile resources that are relevant to you and your child with HAE. HAEA Member Kits are available via print or digital download.Coming Soon!
We offer key information that is critical for families facing a recent diagnosis as you begin your HAE journey. This page includes details on our services, activities, and resources that are available to you as new members.LEARN MORE
The US HAEA Member ID card ensures that people with HAE can always be identified, and offers key information such as prescribed medication, their physician's contact information, and a family emergency contact.Request an ID Card
HAE is a hereditary condition, and children have a 50% chance of inheriting HAE if one parent has the condition. However, the absence of a family history does not rule out the diagnosis of HAE, as scientific reports indicate that as many as 25% of HAE cases result from a spontaneous mutation of the C1-Inhibitor gene at conception. Children of these individuals may also inherit HAE.
HAE can be detected in children via laboratory analysis of blood samples or genetic samples. For the most reliable test result, most experts recommend that a child should be at least one year old for C1-Inhibitor testing.
The age of HAE onset varies considerably, however, symptoms usually appear early in life, most often by age 13. In one study, half of participants reported onset of their symptoms by age seven, and over two thirds became symptomatic by age 13. There is an increased frequency of attacks during puberty or adolescence.
These guidelines provide the medical community with a comprehensive scientific overview of HAE in all its forms (Type I, Type II, and HAE with Normal C1-Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach.
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 their child.
The US HAEA is committed to helping HAE families overcome barriers, successfully manage HAE, and lead normal lives. Here, you can find links to important resources that will help you navigate life as a HAE parent. Below are resources for parents of children with HAE, as well as some child-focused resources for parents to be aware of. Be sure to check back for new resources as your child grows and approaches different stages of adolescence!
Learning to cope with HAE is particularly challenging for children, teens, and young adults. HAE attacks may spark fear and sadness in addition to discomfort and pain. The HAEA Cares Program offers personalized support kits to help your child cope with these times. Choose from the age groups below to request a kit.
The HAEA published a series of books about Nico, a young boy with HAE. The series offers an age-appropriate approach that helps children with HAE understand the condition and share information with their friends and family.ORDER THE BOOKS