The CF community share top tips for travelling with cystic fibrosis

"My top tip if flying is to always ring the airlines first so they can help. Sometimes I get complimentary seats or extra luggage. I also always book with a travel agent who understands me and my health needs." 

"Chat with your CF team about pre-holiday elective IVs if needed. You could also ask your team for spare nebuliser mouthpieces and physio devices, as it will make washing up much easier. Book holidays appropriate to the pace you can manage. Previously we’ve had a lot of busy trips, but this time we’re opting for a restful option as it allows me to get the rest I need each day to feel well." 

"Always take extra medication! I take extra Creon especially and pack my own salted crisps. I also always have a letter from my CF team regarding medication supply that I have with me and I also take a pack of antibiotics in case a chest infection flares up." 

"If your meds need keeping cool, get a cool pouch for them. And if staying somewhere without air conditioning, ask at reception if you can put your meds in their fridge. Plan in advance so you have time to get enough meds and allow extra time for the pharmacy in case they have ran out of something."

“If you use a nebuliser, you can get extra hand baggage with some airlines for free! Saved me £50!" 

“Ensure there’s a cool storage solution for medicines – whether that’s bringing our own or hiring one for the room!”

We have number of resources on our website for people looking to plan a holiday, and our Helpline team can advise on queries you may have about travelling with CF. 

Find out more about travelling with CF

You can also discuss your top tips in our Forum.

If you are thinking of going travelling, please speak to your CF team for advice.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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