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.
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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.
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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!
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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.
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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.
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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 CardHAE 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!
If you would like the HAEA's help with a physician referral or assistance locating an HAE knowledgeable physician in your local area, please click below.
Nearly every family of a child with HAE has questions at the start of the school year. How will the school respond if my child misses too many days of school? How will my child make up missed assignments? An HAE school packet can be a great resource for you and your child's school. Preparing the packet ahead of time will help decrease stress and provide answers to the school staff.
Your child's school nurse might be unfamiliar with HAE. A letter providing a brief introduction to HAE, an idea of what is needed if medical intervention is necessary, and emergency contact information can be a great help to you and the school. Parents should authorize contact between school health staff and your child's HAE physician, and you may consider leaving a dose of medication with the school nurse.
504 plans are formal plans that schools develop to give kids with certain disabilities or conditions, like HAE, the support they need and prevent discrimination. Consider meeting with the school administration to develop an accommodation plan for your child.
The Pam King HAEA Scholarship Program provides financial support for students with HAE who are entering or attending college and seeking to improve their lives through academic achievement.
For parents of students with HAE who are entering college and planning to move away from home, we have some tips to consider to ensure a smooth transition.
One of the most important ingredients to a successful school year is an effective partnership between the student, parents, and the school. Working with your child's school is critical to ensuring that everyone is on the same page and knows what to do when there are unplanned absences or an HAE attack at school. In this webinar, a mother and advocate for her three children who all have HAE shares some of the lessons that she has learned over the years to foster a meaningful and fruitful partnership with her children's school.
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.
This educational resource offers important information from HAE experts that explains HAE attacks and provides guidance on treatment options. Your efforts to share this Toolkit will support people with HAE in your community and may help identify people who have swelling symptoms, but have not yet received a proper diagnosis.
According to recent studies, pregnancy may aggravate or alleviate symptoms in equal proportion. It is important to create an individualized HAE treatment plan during pregnancy.
Our youth program fosters engagement and interaction at conferences and other youth events, while helping develop a strategy to best meet the needs of young people with HAE and their caregivers. We have programs focused on children and young adults.
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We host events specifically designed to reach and connect kids and young adults living with HAE and their caregivers. Learn more about upcoming events in your area, virtual engagements, and ways to volunteer by clicking below.
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The Brady Club is an online, secure platform for children ages 4-12 diagnosed with HAE and their siblings. This page is for our youngest members to enjoy fun activities that help them understand, manage, and cope with HAE while inspiring and connecting them with their peers.
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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.
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