Traveling When You Have XLH: Dos and Don’ts

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by Emily Malcolm |

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Mindfulness and XLH

If you have a rare disease like X-linked hypophosphatemia (XLH), traveling safely can be challenging. Here are a few tips to get you started in planning your next trip for work or fun:

Do This When Traveling

Do plan extra time at train stations, bus terminals, and airports. This will allow you to get where you are going without added stress. You may be dealing with muscle weakness and pain, and thus need extra time for walking between terminals, for example. Plan your route through airports and bus stations, and talk to a travel service if you need assistance to get where you need to go.

Do talk to your travel agent and the airport and let them know if you need extra help or accommodations. You may not need a cane or walking support in your day-to-day life, but these aids may be helpful when traveling. In such cases, do get a letter from your doctor explaining that you need to keep these things with you while traveling.

If you have had orthopedic surgery and have pins — like from a repaired bone break — or replaced joints, such as knee or hip replacements, consider getting a letter from your doctor explaining why you may set off the metal detectors. Most airports have other security options available for passengers.

Do have a plan for where you will go if you have a medical emergency during your trip. You also may want to have your primary physician put you in touch with someone familiar with XLH at your destination. If you need to continue physical therapy appointments, plan that out in advance.

Don’t Do This

Don’t plan activities that will be too strenuous. If you are planning a hike or do something that requires strenuous activity, talk to your doctor beforehand so that you can be as safe as possible. Depending on the activity, you may want to set up “checkpoints” where you can take a break.

Don’t wait until the last minute for your travel preparations. It can be hard to get accommodations if you don’t ask in advance.

Don’t forget to rest and take breaks when you need them. Especially on vacations, it can be hard to remember that you need to take time to relax and recharge.


Last updated: July 17, 2020


X-Linked Hypophosphatemia News Today 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.