How to prepare for a vacation trip with sickle cell disease

Imagine: you’ve had a long and stressful few months, you’ve accumulated time off from work and you’ve saved up some money, so you decide to take a vacation. You already have a list of places you want to visit, so selecting a vacation destination, accommodation, and itinerary didn’t take your time at all. You quickly go online to find the cheapest deals, and once everything is secured, you relax and look forward to your vacation.

This process works for most people when booking vacations. Unfortunately, it’s not so easy when you’re disabled.

I recently booked a holiday as a surprise for my partner’s birthday. Here is an overview of the steps I followed as sickle cell patient to fly safely.

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The first step was to inform the airline and airport I had chosen of my condition and detail my requirements. The airport will then arrange mobility assistance for me. I struggle with my mobility at the best of times; adding heavy luggage and bags will be next to impossible for me. The airport service will also ensure that I have sufficient support to pass all the necessary checks without having to make myself ill. The only real downside is that I can’t explore the duty free shops as much as I would like. Ha-ha!

Once I made those arrangements, I googled the laws of the destination I had chosen. A lot of my medication contains opioids, and you’d be surprised how many countries classify these substances as illegal. If I am going to one of these countries, I request a written consent letter from my medical team.

I also have to make sure to pack all medications in the original boxes, which have printed versions of the prescribed guidelines, instead of bringing a pill box. It’s easier for me, but it increases the risk of my medication being seized by airport security. Unfortunately, I experienced this once.

I will then contact the airline again to obtain two more approvals. One is from the airline to confirm that I am medically fit to travel, and the second is permission to bring oxygen on the flight with me. Once these approvals have been acquired, I must then obtain my oxygen supply from my oxygen supplier. I have experience doing this only for short haul flights. I suspect it remains the same for long haul flights, the only difference being the size of the oxygen cylinders. Or maybe the airline will provide the oxygen under these circumstances? I have no idea – I guess I will one day.

My in-flight oxygen requirements often require me to obtain a third approval for additional baggage allowances, as oxygen tanks are quite heavy and take up a considerable amount of the standard baggage allowance allowed.

Finally, travel insurance! From my latest research, it is difficult to find reasonable travel insurance if you have sickle cell disease in the UK.

As a precaution, I make sure to save some extra funds before I go on vacation to help cover any last minute emergency costs that may arise (hospital, urgent flight home, etc.). I’m not rich, so I suspect the amount I’m saving is probably not nearly enough if such an emergency occurs, but what else can I do?

Luckily I only got sick once while on vacation, and it was a public holiday in Scotland, so there were no additional medical costs. I hope never to fall ill abroad.

On this occasion, unfortunately, a family emergency arose, so I was unable to go on vacation after all. But I hope to be able to reschedule another date in a few months. And yes, when I reprogram I will have to go through all of the same hoops of fire mentioned above before I can fly. I have to follow these steps for every flight, even for short domestic flights, like from England to Scotland.

That said, I look forward to my next vacation, whenever. I haven’t had a real vacation since 2018 so it’s worth the extra steps.


To note: Sickle Cell Disease News is strictly a disease news and information site. It does not provide medical advice, diagnosticWhere treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and aim to spark discussion about sickle cell issues.

About Laurence Johnson

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