Going on holiday

It is important that you get appropriate travel insurance which covers you for PCD before traveling. The following companies offer holiday insurance for people with pre-existing conditions:

All Clear Travel

Free Spirit

City Bond

The Insurance Surgery

However, you may find that more mainstream comparison sites such as Compare the Market already have Primary ciliary dyskinesia listed in their pre-existing conditions list.

You must telephone the medical pre-screening line to ensure that you are covered – failure to do this might result in your insurance being invalid when trying to make a claim.

They may ask you what the condition is and you will be told that they don’t have PCD on their systems! Do not panic – just tell them that it’s another name for it is Kartagener’s Syndrome and they will then be able to ask you relevant questions. Avoid saying that the treatment is like cystic fibrosis as you will struggle to get cover at a reasonable price.

Do not forget to ring the medical screening line again before you travel if circumstances have changed since applying for cover.

Ensure that you take all your medication (including an extra weeks’ supply) plus a suitable stand-by course of oral antibiotics.
Remember to keep some medication in hand luggage in case of airport delays. Do not forget that you will need to use sunblock if taking ciprofloxacin, doxycycline or voriconazole (and for 4 weeks after finishing the course).

In Europe (except for Cyprus, Gibraltar & Malta), the voltage for the nebuliser is the same as the UK (220v) and a standard travel plug adapter is all that is needed. If travelling to the USA, South America, the Caribbean, Cyprus, Gibraltar & Malta, you will need a 110v nebuliser. A plug adapter is not enough.

Discuss this with your Physiotherapy Department well in advance of the holiday and they may be able to lend you one. Alternatively, they are hireable in the USA from medical equipment companies.

 fitness to fly test may be suggested for patients with:

• History of needing oxygen during chest infections.
• Resting oxygen saturation < 94%.
• Spirometry FEV1 < 50% predicted.
• If on home oxygen, it will be needed on the airplane, but a test can be used to determine the flow rate necessary on the plane. Your consultant can arrange this test if required.

It is advisable to take a copy of your latest clinic letter with you to help explain why you are carrying medication and if you need to access medical help whilst away. If you do not have a copy of the latest letter, then contact your consultant’s secretary and they can arrange one for you. It is important that your consultant is happy that you are well enough to travel.