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Living with HAE

Living with HAE

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 a HAE attack.

For example, people around you need to correctly inform the emergency services in case you are no longer capable of doing so yourself during a swelling episode. Make sure that they know which emergency number to call 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.

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 an attack.

If you are the parent of an HAE patient, make sure you inform the school about the condition and 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 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.1

Episodes may increase or decrease during pregnancy; it differs per person and cannot be predicted.2 Your doctor will closely monitor you during pregnancy and consult with you to determine which medication is most appropriate.1
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.3

When in doubt, always discuss it with your doctor.`

Our 5 top tips for travelling with HAE

As an HAE patient, travelling does not

need to be a limitation. Just make sure

you take the proper precautions.

1. Consider the weather

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. It may be necessary to keep your medication cool, such as when you travel to hot destinations. If you do not know whether this is necessary, you can always ask your pharmacist.

2. Don’t forget the paperwork

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. Your doctor could 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.

3. Be prepared with your medication

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.

4. Keep your medication easily accessible

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.

5. Check your end destination

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. In international care centres, doctors and hospitals specialised in HAE can provide help 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: http://haei.org.

Medical passport

Your doctor will provide you with a medical passport, remember to carry it with you 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.

Tracking symptoms

It is important to keep track of your HAE,

to allow you to spot any changes in your

symptoms and to better understand

what living with HAE means for you.

We recommend keeping notes of every HAE attack:

COVID-19

and HAE

To help you be prepared and feel

safe during these challenging

times, we have gathered some

useful information and advice.

Current research shows that patients with HAE who have COVID-19 do not suffer from severe acute angioedema (swelling) attacks or severe COVID-19.4 Evidence exists that patients with good HAE disease control are at low risk of developing angioedema attacks during COVID-19 infection.5 Considering the current understanding of HAE, it is expected that having HAE should NOT cause:

Increased susceptibility to getting COVID-19 infection

Increased severity of infection if COVID-19 is contracted, unless other risk factors or pre-existing disease are also present – e.g., elderly (over the age of 70) or suffer from hypertension, diabetes, cardiac and respiratory disease

It is known that infections in general may be a trigger for HAE attacks,6 therefore, it is important to know the following:7,8,9

In case of infection, swellings may be more frequent, but will return to baseline after the infection is over

When possible, in case of a severe HAE attack which may require a healthcare professional’s attention, immediately contact your doctor prior to any outpatient or ER visit for last minute guidance

Take your HAE medication as prescribed

Keep prescriptions current and make sure you have enough medication on hand

Follow all instructions from local and governmental health authorities and only trust information provided by reliable sources

Increase precautions and preventive measures, including with younger patients, as severe outcomes have been reported by the World Health Organization

Contact your HAE doctor if you have specific questions

Try to stay calm and reduce your anxiety in this difficult time, as stress can be a trigger for HAE attacks

We can all help to prevent the COVID-19 spread. Stay home and respect social distancing. Wash your hands frequently. Take care of yourself and others. Use this time to do what you like the most.

References

  1. Banerji A, Riedl M. Managing the Female Patient with Hereditary Angioedema. Women’s Health. 2016;12(3):351-361. doi:10.2217/whe.16.6
  2. Chinniah N, Katelaris CH. Hereditary angioedema and pregnancy. Aust N Z J Obstet Gynaecol. 2009;49(1):2-5. doi:10.1111/j.1479-828X.2008.00945.x
  3. Maurer M, Magerl M. Hereditary angioedema: an update on available therapeutic options. JDDG: Journal der Deutschen Dermatologischen Gesellschaft. 2010;8(9):663-672.
    doi:10.1111/j.1610-0387.2010.07450.x
  4. Grumach AS, Goudouris E, Dortas Junior S, et al. COVID-19 affecting hereditary angioedema patients with and without C1 inhibitor deficiency. J Allergy Clin Immunol Pract.
    2021;9(1):508-510. doi:10.1016/j.jaip.2020.11.042
  5. Belbézier A, Arnaud M, Boccon-Gibod I, et al. COVID-19 as a trigger of acute attacks in people with hereditary angioedema. Clin Exp Allergy. 2021;51(7):947-950. doi:10.1111/
    cea.13870
  6. Zotter Z, Csuka D, Szabó E et al. The influence of trigger factors on hereditary angioedema due to C1-inhibitor deficiency. Orphanet J Rare Dis. 2014;9(1). doi:10.1186/1750-1172-9-44
  7. Veronez C, Christiansen S, Smith T, Riedl M, Zuraw B. COVID-19 and hereditary angioedema: Incidence, outcomes, and mechanistic implications. Allergy Asthma Proc.
    2021;42(6):506-514. doi:10.2500/aap.2021.42.210083
  8. Belbézier A, Arnaud M, Boccon‐Gibod I et al. COVID‐19 as a trigger of acute attacks in people with hereditary angioedema. Clinical & Experimental Allergy. 2021;51(7):947-950.
    doi:10.1111/cea.13870
  9. Olivares M, Zwiener R, Panqueva L et al. COVID-19 triggers attacks in HAE patients without worsening disease outcome. The Journal of Allergy and Clinical Immunology: In Practice.
    2021. doi:10.1016/j.jaip.2021.12.008