TRAVELLING WITH SARCOIDOSIS
If you’re living with sarcoidosis, you may wonder if travelling abroad is advisable. With careful planning and medical guidance, it’s entirely possible to enjoy a much-needed break. To take the stress out of travel, we’ve compiled some helpful tips for people travelling with sarcoidosis.
Before you Start
It’s advisable to plan your trip several months in advance to make sure you have sufficient time to take all this advice into consideration.
Meet your GP
Whether you’ve been living with the condition for a long time or a short while, it’s important to book a travel health appointment at least 8 weeks before your departure.
This can be booked at your local GP surgery or with a private provider such as MASTA. This will give you the opportunity to discuss any of your travel concerns, and will allow the nurse to perform an appropriate risk assessment. If you need vaccinations these will need to be given at an appropriate interval before you travel in order to ensure that you have the best protection for the proposed trip.
Your GP can give you an overall check-up and may be able to provide you with reassurance that they see no reason why you should not fly. If they provide this as a letter, you can keep this with your travel documents for easy access at all times.
It’s especially important to have adequate travel insurance when travelling with a medical condition.
If you suffer from sarcoidosis, the cost of your single or annual travel insurance policy might be higher than your friends because having the condition is considered a pre-existing medical condition by holiday insurers.
It’s very important that you tell the insurers about your condition(s). If you don’t, your insurance may not cover you in the event of a claim.
It’s good to be prepared while you’re shopping around for a policy. Here are some questions to ask your travel insurer about:
- 24 Hour emergency assistance cover.
- Care cover in a private hospital.
- Emergency repatriation: transport back to the UK.
- Holiday cancellation / lost baggage / flight staff strikes / airline bankruptcy.
- Accommodation and airport lounge access should a flight be cancelled (Columbus Direct, for example offer this)
- Medical expenses cover (some policies offer up to £15m although a typical policy offers around £1m).
- Overnight stays in the hospital.
- Accommodation for friends and family who may be supporting you.
- Emergency medicine or oxygen replacement
To be certain a travel insurance policy is appropriate for your needs, insurers have a process called “medical screening”. During the quote process, you’ll be asked about your condition.
They will be interested in any ongoing medical treatment and your prescription. It’s important to answer all of the questions you’ve asked, but don’t be put off – the process is easy and very simple.
The Hidden Disabilities Sunflower Scheme
Not all people with hidden disabilities such as sarcoidosis require assistance. But if you do, wearing the Hidden Disabilities Sunflower Lanyard discreetly indicates that you need additional support or just a little more time.
The Hidden Disabilities Sunflower Lanyard has been purposefully designed to acts as a discreet sign that the wearer has a hidden disability and requires additional assistance. It has become the established symbol for hidden disabilities in the UK and has been successfully introduced to several major UK airports, supermarkets, railway stations and sports venues.
Be Destination Aware
Before booking your holiday, it’s important to research the destination in good time. Since some people with sarcoidosis may need to avoid direct sunlight and polluted air (e.g. smog, dust,pollen), certain locations should obviously be treated with caution.
Think carefully about what environments tend to make your symptoms worse or cause a flare-up and avoid similar destinations.
Keep in mind the toll that travel can have on your health. Therefore, consider the benefits of trains or short-haul versus long-haul flying, and its impact on your wellbeing.
Ensure you leave sufficient time to travel; this will help to reduce any stress.
Travel with Medicines
Before travelling abroad, ensure your medical kit is fully stocked. Some of us tend not to take much more than painkillers such as paracetamol or ibuprofen, but some may be prescribed steroids, strong anti-inflammatory painkillers, or in some cases immunosuppressants and other medications.
If you’re travelling with oxygen, reach out to the airport and the airline company well in advance to ask them what you need to bring with you. The airport will most likely assign someone to help you through security and the airline can validate that any equipment you need with you is safe for flight. We also recommend you check the guidance on medicines, medical equipment and dietary requirements on this page on the Gov.uk website.
Since some strong painkillers and other over the counter medications are banned in certain countries, it’s wise to check in advance with The Foreign and Commonwealth Office (FCO) or the destination country’s foreign embassy. You may also require a certificate for travel with certain drugs, which your GP can provide in advance. Please do your research and discuss at your travel health appointment.
Travel with your insurance policy documents at all times.
Medical Assistance when Flying
Before booking your flight, it’s worth researching your airline to understand the support they can offer. If you’re travelling with a mobility scooter, or need wheelchair assistance, this may need to be organised in advance. Please note that this will vary from airline to airline.
Air Travel with a Lung Condition
If you’re planning to fly with oxygen, or equipment such as a continuous positive airway pressure machine (CPAP), speak to your airline prior to booking. You will want to understand their policy and requirements to plan accordingly.
If you exclusively use a CPAP for managing a sleep disorder, then consider flying by day, or opting for a short-haul destination instead. This way you can avoid carrying the machine on your person.
Plan for Delays
When travelling with a medical condition, it’s always important to plan for delays. This means having enough medical supplies with you for an extended trip or delayed flight. Consider the incidentals too – such as water and snacks to keep you energised. Check with our travel insurer how you’re covered in case of a delay. In some cases, they’ll arrange a hotel for you or put you in the first-class lounge until your next flight!
Both during your travels and while abroad, it’s important to keep moving.
During long car journeys take the time to make regular stops and take a gentle walk around. On trains and planes, try and move your joints every 30 minutes or so – get up for a walk and stretch out.
When you arrive at your destination, resist the temptation to sit still. Find a way to incorporate physical activity into your life every day so that you’re not sedentary, non-impact exercise like yoga is incredibly beneficial for your wellbeing, mobility and mental health. Many holiday hotels run yoga classes early in the morning before it’s too sunny or in an indoor pool.
It’s worth checking the hotel out before you book so that you know what activities are on offer.
If you suffer with breathing or have a lung condition, it can be helpful to try breathing exercises. There are various techniques that can be helpful when travelling, speak to a physiotherapist ahead of your trip to figure out a strategy best suited to your needs.
Where possible avoid destinations known for their dusty atmospheres, or those where fumes or chemicals (such as big towns and cities) may be more prevalent. These environments may aggravate your condition.
Travel with Hypercalcemia
About 10 per cent of people with sarcoidosis have high blood calcium levels; also known as hypercalcemia. This means that extra care should be taken with diet and environment.
There’s a direct association between sun exposure and hypercalcemia in sarcoidosis. As such, the Foundation for Sarcoidosis Research advise against excessive sun exposure and sunbathing.
Additionally, it’s advisable to limit calcium-rich foods. These can include dairy products, oranges and vitamins containing calcium and Vitamin D. If this is an area of concern, speak to your airline and hotel before travelling, to see if they can accommodate your dietary requirements. Many hotels offer a very healthy menu and can send you a copy of theirs in advance.
You can find more information about sarcoidosis and calcium and Vitamin D here.
Taking Care of your Wellbeing
Tiredness or fatigue is a common complaint for those with sarcoidosis. Therefore, it’s important to take good care of yourself when abroad. This means scheduling in enough time for rest and recovery. As a result, you may prefer to fly short-haul, or pay extra to upgrade to a business class seat for added comfort.
On holiday try to eat a healthy diet, in line with the typical foods you would eat at home. Avoid over-indulging of all kinds, especially alcohol. Be sure to get some much-needed sleep if possible.
Finally, be sure to drink plenty of bottled water at all times to keep hydrated and happy!
Related content from SarcoidosisUK:
Sarcoidosis and Fatigue
Do you experience fatigue? Find symptoms, treatment and more information about sarcoidosis and fatigue.
Do you need travel insurance? Find more information on recommended providers here.
How can we support you? Find more information on our Nurse Helpline, Support Groups and Online Support.