Traveling with Gaucher disease takes some extra preparation, but it can still be enjoyable and manageable.
While symptoms like fatigue, anemia, and bone pain may make travel more taxing — especially if your schedule is packed or you’re walking long distances — taking a few key steps before your trip can make a big difference.
With the right planning and support from your care team, you can stay on top of your health and focus on enjoying the experience.
Talk with your care team first
Before setting out, talk with your healthcare provider about how travel might affect your symptoms or treatment routine.
For example, jet lag, long walks through airports, or high altitudes might be more challenging if you have low energy, joint pain, or an enlarged spleen or liver.
You might want to ask questions, such as:
What do I do if my symptoms get worse during my trip?
Do I need a medical letter that explains my medications for airport security?
Research your destination
Before you travel, it helps to become familiar with your destination’s environment and accessibility.
Check for:
ramps, elevators, or other wheelchair-friendly features at accommodations and attractions
hills, cobblestones, or long walking distances
extreme heat or cold that might worsen fatigue or bone pain.
If you have dietary needs due to Gaucher-related conditions such as anemia, research local cuisine and find restaurants that can accommodate you. A translation card or app can help explain your restrictions in other languages.
Connect with others in the Gaucher community through online groups and patient organizations for tips on accessible destinations, managing symptoms, and staying well while traveling.
Travel at your own speed
Once you’ve reached your destination, avoid overpacking your schedule, which can worsen fatigue or pain.
For a more manageable itinerary, try:
incorporating rest periods each day
limiting activities that require prolonged standing or walking
staying hydrated and eating regular meals to fend off anemia-related fatigue.
Prepare medications
Create a checklist of your medications and supplies. If you receive ERT or SRT, coordinate with your care team or pharmacy about scheduling infusions around your travel dates or ask for help locating an infusion center at your destination.
Your packing list can include:
medications in original containers, plus extras
a doctor’s note detailing your diagnosis and treatment plan
related medical equipment or supplies
a carry-on bag with your medications in case of luggage delays
copies of your prescriptions.
How to handle an emergency
Along with carrying a summary of your medical history and current treatments, and wearing a medical ID bracelet or card that explains your condition, it’s important to know how to quickly get emergency help at your destination. You can:
learn local emergency numbers (e.g., 112 in Europe)
identify hospitals that can handle Gaucher complications
carry emergency contacts for your care team and pharmacy
download emergency apps for your destination
prepare for language barriers with a medical phrasebook or translation app.
Buy travel insurance
Purchase travel insurance with medical coverage to protect against possible treatment delays or Gaucher complications like bone crises or fatigue.
For trips over three months, plan to bring enough medication for the whole stay.
U.S. insurance plans may offer a “vacation override” that allows you to refill prescriptions earlier than usual or obtain a larger supply before traveling. Ask your pharmacy or insurance provider how to arrange this, ideally with your travel dates in hand.
While Gaucher disease may require you to plan a little differently, it shouldn’t hold you back from seeing the world. With thoughtful preparation and flexible expectations, travel can still be exciting, empowering, and entirely within reach.
Gaucher 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.
