Setting up your HAE emergency plan

Last updated Feb. 3, 2025, by Agata Boxe
Fact-checked by Patrícia Silva, PhD

The unpredictable nature of hereditary angioedema (HAE) can make you feel like you’re always watching and waiting for signs of swelling or other disease symptoms. But an HAE emergency plan can alleviate anxiety by assuring you that others have the information they need to help you or your child with HAE.

An HAE emergency plan should include emergency contacts and be adapted to different scenarios — such as home, work, school, and travel — to help ensure that your support network, as well as strangers, know what to do during an HAE attack.

Making an HAE emergency plan

First, your plan should explain what an HAE attack is and how to recognize it.

In the “What is an HAE attack” section, write down the symptoms of an attack, which is most commonly swelling. Areas affected by swelling might be painful and hard to the touch.

While every attack may be different, if there are other non-swelling symptoms that you typically experience during an attack, such as numbness, itching, and vomiting, include them as well.

You may also want to include common attack triggers.

HAE emergency contacts

Think about who should be contacted when an HAE attack occurs. If you are a parent of a child with HAE, you may want to address situations when your child is in school or at home with a sitter. A working adult may consider a trusted coworker or someone from HR. In both cases, think about who your backup contacts should be.

This section of your HAE action plan should include the names and phone numbers of your HAE specialist, other doctors such as your primary physician, and at least one caregiver, family member, or a reliable friend who can help you in an emergency. Before adding their name, check that they are comfortable being on the list.

You should also include the physical address and phone number of the nearest emergency care facility.

HAE diagnosis information

The next section should be information about your HAE diagnosis.

Briefly explain here what HAE is along with your usual symptoms and HAE treatment routine. Include a list of your medications, dosage, and when and how they should be administered.

Keep in mind that healthcare providers — especially if you are at an urgent care center or the ER — may not know much about rare diseases like HAE, so providing this information is essential to ensure being given the right HAE treatment.

What do to during an HAE attack

During an attack, you may be too overwhelmed to remember exactly what to do. A family member, friend, colleague, or classmate who has been told how to help you may feel the same way and require instructions about next steps.

In the “What to do” section of the plan, write down what steps to take when an attack occurs. You should first speak with your doctor about what these steps should involve, including whether you or someone else should administer medication, go to the emergency room, or do both.

Include any additional information from your doctor about treating an attack that should be communicated to ER doctors and technicians.

Personalizing your plan

You may want to create several versions of the plan, one for home, one for work or school, and others for any settings where you or your loved one living with HAE often spend time.

You may need to modify the emergency contacts depending on the exact location where an attack may occur. For example, at your child’s school, a school nurse and a teacher may need to be added to the list. At work, it may be a supervisor or someone from HR.

Modify your plan for traveling, and add to it the addresses and phone numbers of the nearest emergency facilities. If you are traveling abroad, have a professional medical translator translate the plan into the local language.

Who to give it to

Make sure that you always carry two copies of the plan with you — one printed out and an electronic copy on your phone.

Give printed copies of your plan to your caregivers, family members, and roommates. Share electronic copies as well, either by email or on flash drives.

At your child’s school, share the plan with your child, their teachers, and the school nurse.

At work, give it to the people listed as your work emergency contacts.

Where to keep it

Post the plan in an accessible, visible location at home, such as on the fridge. If you have a kit with emergency medicine medications, put a copy in it, too.

At work, keep a copy in your desk drawer or in an area close to your workstation.

Ask trusted people at work, school, or your child’s school to also keep their paper copies where they can easily access them.

Additional advice

Remember to update the plan as needed, such as when one of your emergency contacts changes their phone number, when you switch doctors, or when you’re prescribed new or different medications. Schedule regular “maintenance” reviews of the plan as well, around every six months or so.

Together with caregivers, do periodic mock run-throughs of the plan. You might want to  practice explaining your condition to a health provider. You can also review how to administer medication during an attack.

After a drill, as well as after an attack, look at the plan and adjust it as needed. For example, if there were unanticipated complications or issues, think of what you would have done differently and update the plan accordingly.

Whenever you make changes to your plan, make sure everyone has the latest version.

Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.