Hereditary angioedema (HAE) is a rare condition caused by genetic mutations that may be passed from parent to child. It affects the immune system and leads to episodes of soft tissue swelling.
If you or your partner has HAE, it’s possible that any biological child you have may also develop the condition.
Read on to find tips for navigating HAE as a family.
HAE follows an autosomal dominant pattern of inheritance.
That means that a child only needs to inherit one copy of the affected gene to develop the disease.
If either you or your partner has HAE, there’s a 50 percent chance that your child will inherit the affected gene and develop the condition.
Symptoms of HAE may develop at any age, but they usually appear in childhood or adolescence.
During an HAE attack, swelling occurs in different parts of the body. Common HAE symptoms include:
- skin swelling that starts with tingling and progressively becomes more painful
- abdominal swelling that can lead to severe stomach pain, nausea, and dehydration
- throat swelling that can lead to difficulty swallowing and breathing
An HAE attack is a medical emergency that should be treated immediately. Throat swelling can be life threatening. Call 911 or your local emergency services if you or your child experience this symptom.
If you or your partner has HAE, you might find it helpful to meet with a genetic counselor.
A genetic counselor can help you learn more about:
- how the condition may be passed from parent to child
- the potential benefits and risks of genetic testing for your child
- strategies to screen your child for HAE, including blood tests to check the level of certain proteins in their body
A genetic counselor can also share tips and guidance for talking to your child and other family members about HAE.
If you decide to get routine blood tests to screen for markers of HAE in your child, your doctor or genetic counselor may advise you to wait until your child is at least 1 year old. Certain tests may not be accurate before then.
Genetic testing for HAE may be performed at any age, including in children under the age of 1. A genetic counselor can help you weigh the potential pros and cons of genetic testing.
Talking to your child about HAE may help them develop important coping skills, as well as a sense of family support and trust.
If they have inherited the affected gene and develop the condition, speaking with your child may better prepare them for an episode of symptoms.
It may also help them feel less confused or less afraid if they see another member of your family experiencing an attack of symptoms.
Try to use age-appropriate terms when teaching your child about HAE, including HAE symptoms and when to get help.
For example, young children may find words such as “puffy lips” and “sore tummy” easier to understand than “swelling” and “nausea.”
Open communication is important for helping your child feel safe and supported as your family navigates life with HAE.
Try to encourage your child to:
- share any questions they might have about HAE
- let you or another trusted adult know if they feel confused or upset about how the condition is affecting them or other family members
- tell an adult if they think they might be experiencing symptoms
Sometimes your child might want alone time or space to process their thoughts and emotions. Let them know that you love them and you’re here for them when they want help.
It’s also important to let your child know that HAE can be treated. If they develop the condition, help them develop the skills they need to manage it while taking part in activities at school, with friends, and at home.
With all the treatments that are available today, HAE doesn’t need to hold your child back from pursuing and achieving their dreams.
If your child is looking for information or help that you can’t provide on your own, consider asking your doctor or other members of your healthcare team for support.
Your doctor or other healthcare providers can help answer your questions, guide you to credible sources of information, and develop a plan to screen or treat your child for HAE.
Members of your healthcare team may also refer you or your child to a patient support group, counselor, or other sources of support in your community.
To find information and resources online, consider visiting:
If you or your partner has HAE, a doctor or genetic counselor can help you assess the chances of you having a child that develops the disease.
A doctor or genetic counselor can also help you learn about genetic testing, screening tests, and other strategies to monitor your child for signs of HAE.
To help your child cope with the effects that HAE might have on them or your family, it’s important to talk to them about the condition starting from a young age. Encourage them to ask questions, share their feelings, and reach out for help when they need it.