Travel Tips for People Affected by Fabry Disease

Travel Tips for People Affected by Fabry Disease
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Fabry disease is a rare genetic disease that results from abnormal buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells and tissues. Gb3 accumulation can cause a wide range of symptoms, which can pose problems for travelers who have the disease.

Here are some tips for safe travel if you have been diagnosed with Fabry disease.

Make travel preparations in advance

Traveling with a chronic disease requires planning ahead and taking into consideration circumstances that healthy people often take for granted.

In the case of Fabry disease, this may include:

  • finding out if specialized medical assistance is available at your destination;
  • making a note of restaurants that cater to your dietary needs;
  • ensuring living spaces will meet your needs.

It also is a good idea to consult your doctor as you plan travel. Prepare a checklist that includes medications, precautionary measures, and emergency contacts to take with you.

Finish ERT sessions before travel

Enzyme replacement therapy (ERT), such as Fabrazyme, usually is the first-line treatment for Fabry disease. An intravenous infusion of Fabrazyme usually occurs once every two weeks. It is important to not miss any ERT sessions, so plan your travel around your ERT schedule.

If you are planning longer periods of travel, ask your doctor about how and where you can receive ERT at your destination(s).

Carry medical records

You may need to go for a checkup or encounter an emergency situation at your destination. A letter from your doctor or a personal health record can convey information such as the type of Fabry disease you have, ongoing treatments, possible special needs, and emergency contact information that healthcare providers or first responders can use.

Seek services from specialized travel agents

Get in touch with travel agents who specialize in accommodating the needs of travelers with disabilities. These agents can make sure your special needs, such as food, accessible healthcare, and special accommodations, are available at your destination. One way to find out about these travel agents is to contact local support groups or your healthcare provider.

Inform the airline of your travel needs

You should inform your airline about any special needs during booking or at least 48 hours before travel. They can offer necessary arrangements in advance. These include providing a wheelchair at the airport, help getting through security, and assistance in boarding the aircraft, as well as assigning specific seats that are comfortable for you.

Organize your medicines

Properly organizing your medicines can save time and avoid the stress of  searching for them. Designate a separate space in your medicine kit for the ones that are most important. Preferably, carry duplicate sets of medicines in additional bags. This gives you a backup if you or the airline lose one of the bags.

 

Last updated: Mar. 10, 2020

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Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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