Travelling with Haemophilia - a few tips

By - Hannah Brunning, mum to Jake

A few years back when my son (severe A) was one years old, I couldn't even imagine travelling abroad with him. Luckily my husband (the less anxious of the two) made us, 3 months after he had his port-a-cath fitted and we have been abroad every year since. In fact as we normally take a beach holiday, it's the safest place he is all year round - all that sand makes for soft landings! So here are a few tips and things we have learnt along the way.

1. Get a letter from your consultant explaining the condition, why you need to carry treatment, products, needles etc. and why it needs to stay in the cabin with you (our hospital has a generic letter they give us each year). You will need this when going through security.

2. Holiday insurance - we have had little trouble with insurance and have found that most companies insure Haemophilia. You will need to fill out extra information about the condition, very self-explanatory.

3. Find a list of Haemophilia centres close to where you are travelling and print it off to take with you. You can search at the following website.

4. Ask your factor delivery company if they can provide a travel syringe box to take with you, they are much smaller than the standard ones.

5. Take enough factor and supplies for your stay and take extra for top ups. Our centre recommends between 3-5 extra doses for 10 days (as you can imagine I take 6!)

6. Take a small cool bag and ice block if going to a hot climate to take in car etc. ( as although most factor can be kept out of the fridge for a period of time, it cannot exceed very hot temperatures).

7. Carry your factor with you on-board the plane, to avoid lost luggage, breakages and temperature variations in the hold.

8. Remember although in another country you can still phone your normal centre and out-of-hours line to get advice.

9. If going to Disneyland remember to take evidence (letter, DLA, Blue badge) you can jump the queues!

Travelling with Haemophilia - by Lenny