Travel Tips for People with Pompe Disease
Pompe disease is a rare genetic disease characterized by an abnormal buildup of a sugar called glycogen in cells and tissues. Its symptoms, which include progressive muscle weakness, fatigue, and heart arrhythmias, can pose problems while traveling.
Here are some tips for safe travel if you have been diagnosed with Pompe disease.
Plan well in advance
Traveling with a rare disease requires a good deal of preparation, so that all the requirements are taken care of and last-minute rushes avoided. Consult your doctor prior to travel, and prepare a checklist or travel plan that includes such important information as medications, precautionary measures, and emergency contacts to take with you.
Make sure to complete ERT schedules before travel
Enzyme replacement therapy (ERT), such as Lumizyme, is the first-line treatment for Pompe disease. All ERT sessions must be attended without fail, so plan your travel in a way that you will not miss any session. Treatment with Lumizyme, for instance, is as an intravenous infusion given every two weeks.
Check with your healthcare provider for specific travel advice, or for treatment arrangements that match your plans if traveling for longer periods of time.
Carry a medical letter from your doctor
It is a good idea to carry a medical letter from your doctor or a personal health record that contains information about your condition, ongoing treatments, any requirement for respiratory support, and contact information in case of an emergency.
Consult specialized travel services
Specialized travel services can cater to people with disabilities, and it is thought best to use their services instead of regular travel agents or online booking. Specialized services are recommended so that your needs, like special accommodations, food, and accessible healthcare facilities, are met.
If you are in the U.K., the Association for Glycogen Storage Disease UK (AGSD-UK) can put you in touch with such specialized travel services. Support groups in your country may help in guiding you, and your medical team may also know of specialized travel services.
Inform the airline of your travel needs
You will need to inform the airline of your special travel needs (a doctor’s letter, again, can come in handy) while booking your ticket so that necessary accommodations can be made. Inform the airline about things like needing a wheelchair to board and exit the plane, and any special equipment you may need to carry, such as a bilevel positive air pressure (BiPAP) ventilator or a mobility scooter.
Ensure your equipment conforms to the airline’s electrical standards
If you carry items such as ventilators, be sure to check with the airline about details such as the type of sockets and electrical current available, and the possibility of using your equipment in the airport and in the cabin during the flight. Some airlines may have reservations about using conversion plugs, so check with the airline office beforehand. Many also want details of equipment carried aboard a plane (like weight and measurements, type of batteries and voltage).
Be sure to carry details of your equipment with you, and get written permission for its use to avoid any confusion.
Organize your medicines
Organize your medicines to ensure easy access to them at all times. Separate the absolutely important ones from others, so that you don’t waste time searching. Carrying duplicate sets of medicines in additional bags is a good idea, in case one of the bags gets lost.
Last updated: Feb. 28, 2020
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