How to build an HAE emergency kit for work or school 

With hereditary angioedema (HAE), leaving the safety and comfort of home for work or school can feel stressful if you are concerned about sudden swelling attacks. Having an HAE emergency kit ready is a simple way to protect both your health and your peace of mind.

Make sure to provide a note from your doctor and discuss your needs with your employer or school, especially if you require refrigeration for your medications or a discreet, private location for administration.

Treatments and supplies to keep on hand

Start your healthcare kit by including your daily and emergency medications and supplies.

Medical items should always stay packed in the kit for on-demand treatment, unless a component needs refrigeration or is particularly temperature sensitive. Check with your doctor about which medications are OK to include in your kit. Also make sure that all medications are in the original packaging with the prescription label containing your name and dosage.

You might include the following:

• oral medication
• prefilled syringes or medication vials
• flat-surface sterile covering
• gloves
• alcohol wipes
• medical tape and bandages
• needles
• syringes
• vial adapters
• sharps disposal

Comfort items

Having a health flare can trigger a lot of anxiety, even when you are prepared. Packing additional items in your kit can add comfort during an episode.

Some extra items might include:

• a pillow or stuffed animal
• headphones
• a fidget toy
• bottled water or other drink
• snacks
• reading material

Questions to ask your doctor:

Here are some questions you might want to inquire about with your medical professional.

• How many on-demand doses should go in my kit?
• How much time should I have to wait after administration of rescue medication for the attack to be resolved?
• At what point do I seek emergency medical attention?

Medical alert letters and emergency plans

Consider requesting a letter from your doctor for your school or work. This can be kept along with emergency phone numbers. It might include a brief description of HAE, which medications you may need and how to administer them, and what type of attack could require a 911 call or emergency interventions, such as a life-threatening laryngeal attack.

Along with that letter, you can also include:

• your name, date of birth, address, phone numbers
• your doctor’s name and contact details
• your specific type of HAE, maintenance medication and emergency medication
• your personal emergency contacts — more than one, in case someone isn’t available

You might also consider wearing a medical alert bracelet or dog tag with similar information. These items can speak for you even when experiencing symptoms that make it difficult to communicate clearly. This is especially important for removing any guesswork for school staff or coworkers during a high-stress moment.

How to store your kit

When planning your school or work emergency kit, think about where it could or should be stored. Some items may require a climate-controlled environment or refrigeration.

Remember, depending on the type of attack and severity of the emergency, someone else may need to obtain the kit for you, so it should be easily accessible for them.

Temperature and environmental protection

Many specialized HAE medications are sensitive to extreme temperatures. They can potentially lose effectiveness if they get too hot or too cold, so protecting the kit is important. Avoid leaving it in a hot car and keep it away from direct sunlight. It should also not be stored near heating or cooling vents. Using an insulated, padded medical bag can help keep the supplies at a stable temperature.

Ask your pharmacist about the medication’s ideal temperature.

Location and accessibility

Having your HAE kit accessible in the event of an emergency is essential. Think about where it could be stored securely while also ensuring quick access during an emergency.

• For the workplace: Managing HAE at work can be tricky because you need to decide if your workplace is safe for you to keep a kit in an unlocked place for easy retrieval. If not, ensure multiple people can unlock the kit’s location.
• For school environments: Coordinate with the school nurse and main administration office to find a safe, central location where the kit can be retrieved without delay.

Additionally, discuss a detailed emergency protocol for your child’s safety and well-being during an HAE attack.

Educating key people at work or school

You absolutely do not need to share your personal medical history with everyone, however, letting a few trusted people know can help keep you safe. For example, at work it might be an HR person, a close colleague, or a supervisor. For minors, it is always important for the school nurse and classroom teacher to be informed about the HAE protocol to best assist in case of an emergency.

How to explain HAE simply

HAE is a complex disease. When conveying information to trusted individuals, make it as clear and concise as possible by using simple, plain language and analogies. Always make sure to explain that this is a serious genetic condition and entirely different from just an allergic reaction, even though it might appear similar.

Here are some scripts you can use.

For adults:

“I want to share some information about my health so that we are prepared in case I ever need help. I live with a genetic condition called hereditary angioedema, or HAE. It can cause sudden swelling attacks in different parts of my body. It is not an allergy, and standard allergy medications like EpiPens do not work. I keep a specialized HAE emergency kit in my desk with my specific medicine. If I ever tell you I am having an attack, or if I have swelling in my face or throat, please help me get my kit right away and call for emergency medical assistance.”

For parents:

“I want to share some information about my child’s health so that we are prepared in case they ever need help. My child lives with a genetic condition called hereditary angioedema, or HAE. It can cause sudden swelling attacks in different parts of the body. It is not an allergy, and standard allergy medications like EpiPens do not work. They have a specialized HAE emergency kit here at school, in the nurse’s office, with specific medicine. If they ever tell you they are having an attack, or if they have swelling in their face or throat, please get them to the nurse and their kit right away, and call for emergency medical assistance.”

Essential next steps

Here are some first steps you can take in preparing your HAE emergency kit:

• Gather your medical paperwork: Ask your HAE specialist for a signed medical alert letter and an updated copy of your HAE treatment plan.
• Select a protective bag: Find a durable, insulated pouch or small bag that can safely hold all of your on-demand medications, and any syringes and additional supplies you may need.
• Check your expiration dates: Set a recurring calendar reminder every few months to check the expiration dates on your stored medications so your kit is always up to date and ready to use.

Everyone living with HAE want to avoid attacks as they strive daily to find a work-life balance to maintain well-being. But remember that your health comes first, always. You cannot work effectively or study properly if you are not at your best.

So, please take the time to prepare and plan your HAE emergency kit. Stay healthy and safe.

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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.