Ichthyosis and Holidays

Written by Cat Lancashire, ISG Ambassador

We all know that travelling aboard can be stressful at times but add medical conditions into the mix and things can get even more complicated. Our son was born with Epidermolytic Ichthyosis (EI) in May 2013 and we made the decision very early on to keep doing all the things we loved…including going on holidays. 

Our first trip on a plane with Alfie was to the USA when he was 1 - extreme for a first holiday but Lee, Alfie’s dad, was working out there at the time. I hadn’t factored in how difficult travelling with ichthyosis could be and was horrified that most of our luggage went missing on the flight over; luckily I had packed dressings and some small tubes of cream in my carry on luggage but we had to go and raid the pharmacy as soon as we landed!! 

That first trip taught us a lot and since then we have a series of things we do in order to make travelling a little less stressful. As soon as we book flights we get in touch with the airline and request a medical bag. This is usually a 10kg extra carry-on allowance which allows us to take up to 2 weeks of supplies. Most airlines will require a letter from a doctor to permit the medical bag and will often ask for a list of items that you are required to take – we use the same letter from Alfie’s dermatologist every year and we supply a list of items that will be included in the medical bag. 

If you require airport assistance you can request this in advance. For Alfie, he can overheat easily, finds it hard to stand in queues due to sore/blistered feet and occasionally uses a wheelchair so we use airport assistance to help with this. The airport will provide a wheelchair if needed and can escort you through check in/security. 

We pack our supplies into the medical bag ensuring that everything is in original boxes with prescription labels on; we have been advised by airlines to do this (however, no one has ever questioned when we’ve forgotten). We also carry scissors for cutting dressings; these must be under a certain size so check with the airports you are travelling through. From past experience we take the medical bag on as carry-on so it doesn’t leave our sight! 

Airport security can take a while so we allow an extra 45 minutes to get through. As most of Alfie’s emollients are 500ml they are over the safe allowance so have to be individually scanned. Alfie also has a lot of nutritional supplements that have to be scanned…hence the extra 45 minutes (don’t get stuck behind us!) 

The key takeaways are:

• Plan ahead: Request a medical bag and bring a doctor’s letter + item list
• Use support: Book airport assistance if needed
• Pack smart: Keep items labelled and carry them onboard
• Allow extra time: Security checks can take longer due to medical supplies

Extra things you might want to consider when travelling are: 

• Cooling vest/towel
• Spray bottle and portable fan
• Keep hydrated on the flight
• Take more supplies than you would normally need in case of delays
• Take some smaller tubes of creams in a bag for easy application on the flight
• Make sure your travel insurance covers your ichthyosis 

And most importantly…. HAVE A GREAT HOLIDAY!!