Living with HAE

If you are an HAE patient, you may have many questions with regards to daily life, such as:

'Is it safe for me to go on holiday?'

'Can I have children?'

'How does this affect my family?'

Family and Friends

HAE is not contagious and is therefore not a risk to others. It is important to inform your family, friends and colleagues about your condition so that they know what they should or should not do if you have an HAE attack.

For example, so that they can correctly inform the emergency services in case you are no longer capable of doing so yourself during an episode of swelling. Make sure that they know which emergency number to call in order to contact your attending doctor or hospital.

It is best to be open about your disease so that people around you can act quickly in a panic situation.

Working and studying

You can still work and study with HAE, using the correct treatment, you will be able to live a close to normal life. That is why it is important to treat at the first signs of the attack.

If you are the parent of an HAE patient, make sure you inform the school about the condition and also ensure they know what to do in case of an attack. Work very closely with the school and provide them with all materials and information they might need in order to help your child live a full life.

Pregnancy and fertility

HAE has no effect on fertility, which means if you have HAE, you have the same chances of conceiving as women without HAE.

Episodes may increase or decrease during pregnancy, it differs per person and cannot be predicted. Your doctor will closely monitor you during pregnancy and consult with you to determine which medication is most appropriate.

Remember that there are potential interactions between your medication and other medicinal products, including products that do not require a doctor’s prescription, and nutritional pregnancy supplements.

When in doubt always discuss it with your doctor.

Travelling with HAE

As an HAE patient, travelling does not need to be a limitation. Just make sure you take the proper precautions. The following is a summary of the main points of concern:

  • When choosing your destination, take into consideration how well you will tolerate the weather there. If you know that extreme heat can trigger an attack, for instance, visit the Canary Islands during the winter instead of the summer. If you often have problems with cold weather, it is better to avoid countries or regions that have a continental climate in the winter.
  • When travelling abroad, it is especially important that you take along a doctor’s declaration that states that it is vitally important for you to have your medication and associated materials with you in case of an emergency. Perhaps your doctor can also provide a short-written description of your disease. To avoid problems, it is important that this declaration is in English and, if necessary, the language of the country of destination.
  • Make sure that you always have enough medication and materials necessary for administering the medication to last for the duration of your trip. If necessary, contact the pharmacy of your choice prior to departure in order to obtain the materials necessary for administering the medication.
  • Always take emergency medication with you when you travel. Make sure that this medication is readily accessible by placing it in your hand luggage and not in the boot of the car or as checked luggage on an airplane.
  • It may be necessary to keep your medication cooled, such as when you travel to hot destinations. If you do not know whether this is necessary, you can always ask your pharmacist.
  • Check in advance whether there is a hospital or doctor near your destination that is specialised in HAE so that you and your family can always take immediate action in case of an emergency. The international location of care centres, doctors and hospitals specialised in HAE can provide assistance and support during your trip. For an overview of all HAE centres around the world, go to the website of HAEi, the international patients’ association for HAE patients:

Medical passport

Your doctor will provide you with a medical passport, remember to carry it at all times. Keep your SOS emergency card with you, preferably somewhere where it is easy to find, such as in your wallet. This will help first-aid providers and ambulance personnel take quick and efficient measures to treat you if you have an HAE episode away from home.