A rare autoinflammatory disease is no reason to avoid holiday trips. If trips are well planned and particular disease requirements are followed, nothing needs to stand in the way of relaxing and having fun.
If you or your child suffers from a rare autoinflammatory disease, we recommend that you discuss your travel plans with your doctor well ahead of booking or taking the trip. He/she can give you advice on any health-related issues. He/she can also inform you about travel medicines and their potential interactions with medicines that you take regularly.
Some countries require certain vaccinations, and some medicines need to be taken in a timely manner, e.g., malaria prophylaxis treatment1. When planning your trip, please obtain information about which vaccinations are necessary and appropriate for you or your child – make sure to speak to you doctor about any implications the vaccines may have on your regular medicines. It may take several weeks or months following vaccination before sufficient vaccine protection is in place, or boosters may be necessary. Particularly with trips abroad to different time zones, you may have questions regarding when to take your regular medication. These are all questions your doctor will be able to help answer.
The range of rare autoinflammatory diseases means that symptoms vary between affected persons. This also means that limitations on travel which are associated with the disease may vary: some people living with rare autoinflammatory diseases are only mildly restricted, while others have physical disabilities and have to consider barrier-free accessibility. Hence, the travel destination, mode of transport and the availability of treatment facilities which may be required should always be adapted to the individual health situation. The doctor treating you can also give you advice about this.
Good trip planning also includes considering whether you or your child need medical care at the trip destination. It is useful to clarify in advance whether and where appropriate treatment options are available. In addition to having access to qualified health professionals, this includes the supply of medicines and other resources. To avoid having any nasty surprises, please also seek information in advance about whether treatment can be covered by a travel health insurance or whether it has to be paid out of pocket.
If you do not speak the language in your destination country, you may want to compile a brief dictionary in the relevant language. For example, important sentences would be: “I/my child have/has the following disease (write down the medical term)” “These are my medicines”, “Where is the nearest hospital?” etc. Mostly, this kind of information cannot be found in travel dictionaries but can be very helpful.
|Rare autoinflammatory diseases names|
|CAPS (Cryopyrin-associated periodic syndromes)||CAPS (Cryopyrin-assoziierte periodische Syndrome)||CAPS (sindromi periodiche associate a criopirina)||CAPS (síndromes periódicos asociados a la criopirina|
|SJIA (Systemic juvenile idiopathic arthritis)||SJIA (Systemische juvenile idiopathische Arthritis)||La SJIA (artritis idiopática juvenil sistémica)||SJIA (Artrite idiopatica giovanile sistemica)|
|AOSD (Adult-onset Still’s disease)||AOSD (Still-Syndrom des Erwachsenen)||AOSD (enfermedad de still del adulto)||AOSD( Malattia di still dell'adulto)|
|FMF (Familial Mediterranean fever)||FMF (Familiäres Mittelmeerfieber)||FMF (La fiebre mediterránea familiar)||FMF (Febbre Mediterranea Familiare)|
|TRAPS (Tumor necrosis factor receptor associated periodic syndrome)||TRAPS (Tumornekrosefaktor-Rezeptor-assoziiertes periodisches Syndrom)||TRAPS (Síndrome periódico asociado al receptor del factor de necrosis tumoral)||TRAPS (Sindrome periodica associata al recettore del fattore di necrosi tumorale)|
|HIDS/MKD (Hyperimmunoglobulinemia D syndrome/Mevalonate Kinase Deficiency)||HIDS (Hyperimmunglobulin-D-Syndrom)||HIDS (El síndrome Hiperinmunoglobulinemia D)||HIDS(Sindrome da iperimmunoglobulina D)|
If travelling to non-native–speaking countries, you should carry with you important documents in one of the languages spoken at your destination. We recommend you take several copies of the documents with you, i.e., one copy in your carry-on luggage, copies in your suitcase, as well as scans stored on your smartphone and tablet or on your e-mail server.
Besides your passport or your identity card and tickets, the most important documents are as follows:
If you or your child regularly takes medicines, please do not discontinue use during your trip before checking with your doctor. If you are unsure about the need for medicines during your trip or whether you will need an extra supply or a prescription, please consult your doctor or pharmacist. Before you start your trip abroad, it is also important to clarify how many medicines you are allowed to carry in your travel luggage. In addition, prior to travelling abroad, you may require a statement from your doctor about the medicines you will carry with you2. Please ask your doctor to issue an appropriate statement for customs control.
In the case of flights you need to be aware that some medicines cannot tolerate the cold temperatures in the cargo hold. Other medicines – e. g., some injections – have to be permanently stored in a cool place and protected from light; otherwise they will become ineffective. But they must not become too cold or freeze. So first of all, please consult your doctor or pharmacist on how to transport or store your medicines appropriately. During the flight, your medicines are to be well-stored in your carry-on luggage – in a cool bag, if necessary. If you want to carry your medicines, particularly injections, in your carry-on luggage, please ask your doctor to include this in the statement mentioned above. Preferably, please also ask the airline about what needs be taken into account for the transport of medicines.
In the case of car travel, an electric cool box connected to the cigarette-lighter plug is suitable for refrigeration. At your holiday destination, you can use the mini-bar in your hotel room or ask reception to store it for you.
If applicable, please ask the travel provider / operator / landlord / hotel about:
 Public Health England, Malaria prevention guidelines for travellers from the UK https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/833506/ACMP_Guidelines.pdf (Accessed 16.08.16).
 NHS UK, Can I take my medicine abroad
http://www.nhs.uk/chq/Pages/1074.aspx?CategoryID=70 (Accessed 16.08.16).