When you have a HAE management plan that covers all possible emergencies, then you will be able to relax and feel safe.

 

Research your country

  • There is a wide variation in HAE services accessible in different countries
  • Do some research: Establish where a main hospital is located in relation to where you are staying. The HAE International website (www.haei.org) will give you information about countries with HAE services. Follow the links to identify hospitals near to your destination and treatment options available.
  • Alternatively, you can contact Rachel who is the UK representative on the HAEi Executive Committee, who can help you with information or put you in touch with the local HAE patient representative

 

Travel Clinic

  • Seek advice from your hospital travel clinic regarding required vaccinations
  • Ask for information about any travel advice for your specific destination

 

HAE management plan for travelling

  • Plan your trip at least three months in advance if possible so that you can discuss every aspect of your HAE management plan with your HAE specialist and Specialist Nurse. Your doctor will advise you about medications, and what you should do in the case of an acute attack affecting the abdomen or throat
  • Every HAE patient has an individual disease profile and will need a plan that takes into account the frequency and severity of their HAE symptoms
  • You will need to carry your acute attack medication with you in your hand luggage in the plane, and keep it accessible at all times
  • If you have frequent attacks your doctor will discuss the possibility of training you to give your own acute attack medication
  • You will need to take sufficient medication to keep you safe for the duration of your time away
  • Carry a doctor’s letter describing the treatment you will need if you attend an emergency department. If possible get your letter translated into the appropriate language
  • Basic HAE information in different languages can be downloaded below:
    – English
    – French
    – Spanish
    – Italian
    – Portuguese, and
    – Dutch
    Please note – the guidelines conform to ‘Orphanet guidelines 2009’ which may differ in some ways to the guidelines provided by your own HAE Specialist
  • Carry contact details for your HAE Consultant and Specialist Nurse
  • Carry your HAE UK Patient Information Booklet
  • Carry your HAE UK Patient A&E Card
  • Wear a medic alert bracelet or similar identification – see the medicalert website.
  • Remember, some medicines, such as anabolic steroids (Danazol), come under ‘controlled medicines’ laws. A personal license is needed to take these medicines abroad. You must apply for this license at least 10 working days before you travel, and your GP will need to provide a letter supporting your application.

For more information on taking controlled medicines abroad, follow this link

 

Travelling with your medications

  • Always declare your medications and show your doctor’s letter when going through baggage control. You will need to keep medications with you with your hand luggage in case you should get a HAE attack whilst travelling
  • Berinert needs to be stored below 25oC. Do not freeze. You need to take it as hand luggage rather than putting it in the hold where it may be too cold and freeze. For extra safety it could be put in a cool bag while travelling to ensure that the temperature does not go above 25oC. Also, if it is hot while on holiday it may be best to put it in a fridge or keep it in a cool bag. In hot countries 25oC is not considered to be room temperature and they would routinely store Berinert in the fridge
  • Cinryze needs to be stored below 25 degrees C. Do not freeze. Store in original package in order to protect from light
  • Firazyr needs to be stored below 25 degrees C. Do not freeze
  • Further information regarding general travel advice with prescription drugs can be found by following this link

It is also worth checking with the airline and airport before travelling what their restrictions are regarding travelling with medication.

The revised consensus guidelines recommend:

All patients should have an additional treatment plan in place to ensure their safety when away from home or abroad.

 

Every patient should hold a safe quantity (minimum of one) of acute treatment doses at home dependent on individual needs.

 

Each C1 inhibitor deficient patient should be able to manage his of her symptoms
 proactively in such a way that they maintain personal safety and minimal disruption in living a healthy and productive life.

Read Rachel’s travel story

If you are planning more adventurous holiday pursuits you will need to set up a specialised plan to cover all elements of your activities.