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If you or your child has a rare condition, such as an autoinflammatory disease, your life may look a little different from that of other people and you may face added challenges. Browse this page and explore information and articles that may help with some of the uncertainties or trials faced.

Tips and tricks for taking the stress out of travel

Tips and tricks for taking the stress out of travel

 

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.

Discussing travel arrangements with the doctor treating you

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.

Travelling abroad: 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.

Adapting the trip destination and mode of transport to your individual situation

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.

Putting together your travel documents and researching appropriate treatment facilities

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
English German Spanish Italian
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:

  • Blood type card
  • If applicable:
    • Disability card
    • European emergency health card
  • Medical statement in many languages (with stamp and signature) for all required medicines and items, e. g., syringes, customs certificate / import licence, if applicable
  • Have a look online to see whether you will be required to fill out any forms related to your condition and medicines prior to your trip (you can often find this information on your ‘department of foreign affairs’ website or on the website of your destinations embassy
  • Package inserts of all medicines taken on the trip
  • Certificate of Travel Health Insurance

Correct transport and storage of medicines

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.

Barrier-free/Accessible Travel

If applicable, please ask the travel provider / operator / landlord / hotel about:

  • Are ramps/lifts installed everywhere?
  • Is there car parking for people with disabilities?
  • How wide are the doors?
  • Are there any grab handles in the toilets?
  • Can I get to the bed with my wheel chair?

Transport

  • Airlines are obliged to transport aids (wheel chairs etc) free of charge.
  • Bus tour operators offer specific bus travel for people with limited mobility and undertake to organise it.

Further research

World Tourism Organization (UNWTO)

The European Network for Accessible Tourism

Patou European Accessible Tourism Directory

Tourism for All

References:
[1] Public Health England, Malaria prevention guidelines for travellers from the UK https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/461295/2015.09.16_ACMP_guidelines_FINAL.pdf (Accessed 16.08.16).
[2] NHS UK, Can I take my medicine abroad
http://www.nhs.uk/chq/Pages/1074.aspx?CategoryID=70 (Accessed 16.08.16).

GLDEIM/ACZ885/0148

Will life change ?

Illnesses that occur in childhood and adolescence will impact life in different ways, depending on how sick the child is. Daily routines may change, nutritional needs may alter, energy levels may fluctuate and treatment plans may have to be taken into consideration and managed carefully.

Children with an autoinflammatory disease may find they can’t do everything their friends can do. They may also have to put up with pain and go to therapy sessions and hospital appointments, or even spend prolonged periods in hospital. This can be upsetting, unsettling, and frustrating and lead to feelings of being ‘different’ or standing out from the crowd. These feelings are not always easy to deal with at any age – how well children handle these often depends on how old or mature they are, and comes down to their personality.

As well as noticing changes to what can or can’t be done, the other thing that may change is the ability to make plans for the future. Often it’s difficult to plan ahead because you can’t predict the severity of the symptoms tomorrow, the next day, the next week, or even the next year. Holiday plans, or even just plans to go out for dinner, may have to be put on hold or decided upon at the last minute. You have to learn to live for the moment and make the most of each day at a time.

The best approach to dealing with change is to foster a caring and open environment and try to find support for your child and yourself, such as finding people who are going through something similar that they/you can talk to and spend time with. Although difficult, it is also important to try to surround yourself with people who can make an effort to understand your situation, even if they are not living with something similar. It’s also vital to try to make every day seem as normal as possible for your child – let them see their friends, go for a walk, read, watch TV or whatever makes them happy.

Where to seek additional support

If a member of your family has an autoinflammatory condition, you may need additional support. There may be times when the practicalities of everyday life, such as financial struggles and treatment strategies, feel like too much to bear, or you might be looking for support for you or your child’s emotional needs. There is support available for all sorts of the challenges (e.g. treatment support, help with symptoms, support options for children) you may be facing, or may face in the future. Good places to start include your own or your child’s doctor, the hospital department you visit, social services and health insurance providers. You can also seek help from child protection authorities. Friends and family who know you and your needs very well can be an invaluable source of support. And last, but by no means least, you can turn to rare disease support groups who will understand what you are going through.

Telling others about living with autoinflammatory disease

If your child has an autoinflammatory disease, it’s likely you’ll be wondering how to explain to friends, relatives, your child’s nursery or school teachers, and classmates what is actually going on – why your child is tired, withdrawn, unable to take part in usual activities or absent from school and family get-togethers.

The people involved in your child’s life will, whether you like it or not, have an impact on your child and shape your child’s perception of themselves and the world around them. You don’t want them to make assumptions or treat your child harshly for not doing things / getting involved in activities they cannot do through no fault of their own, and in doing so damage your child’s self-esteem. The more informed people are, the less likely it is that they will treat your child inappropriately, and so the easier it will be to carry on with daily routines and ensure your child is relaxed and confident. So, where do you start? How can you begin to explain? Here are some helpful hints:

  • Be open and honest
  • Start at the beginning - explain when and how your child was diagnosed with autoinflammatory disease, what his/her symptoms are and how they affect your child
  • Explain that your child’s condition changes from day to day. Sometimes they are well and other times they are not – consideration and flexibility is needed
  • Highlight that even though your child often looks ok, this doesn’t mean he/she always feels ok – it’s good to check with them (quietly though so as not to draw attention to your child and make them feel different)
  • Emphasise that your child is still a child and needs to be treated in a similar way to any other child to help maintain their self-esteem
    • The difference is that sometimes they might not be able to do everything other children do (run, play outside, or ride bikes) and they might get ill more often than other children and may need rest or medical treatment
  • Ask people for understanding without judgement

Also don’t underestimate how those around you may perceive you. If your friends, relatives or colleagues don’t understand or are not aware of what you are experiencing, they might be wondering why you have withdrawn, or are not as available as you have been in the past for social activities or even work. The way your friends, relatives, and colleagues react can also impact your personal wellbeing. For more information and advice on managing your own relationships, check out the 'You’ section.

Kids Corner

Want to help your child understand their illness ? Why not visit Kids Corner with your child and read Paula and Tim's explanation of autoinflammatory disease and their experience of attending school and after school activities with their condition.

LEARN MORE
Kids Corner

December 2015 - GLDEIM/ACZ885/0044