Travel Tips for People with Pemphigus or Pemphigoid

Traveling with a rare disease isn’t always simple but it is possible. Whether you’re heading out for a much-needed vacation, visiting loved ones, or attending a conference, the desire to explore and connect with the world doesn’t go away with a diagnosis. In fact, for many living with pemphigus and pemphigoid, travel can be a powerful reminder that life is still full of opportunities, discovery, and joy.

Still, we know the logistics can feel overwhelming – managing medications, preparing for the unexpected, and wondering if your body will cooperate. That’s why we’ve created this list: to offer practical tips, encouragement, and tools to help you travel with greater confidence and peace of mind. Because you deserve to experience new places and meaningful moments without having to leave your health and comfort behind.

Helpful hints collected from the IPPF community:

• Bring all your meds + extras in your carry-on
• Bring a list of your current meds, dosages, and emergency contacts.
• Keep medications in their original labeled containers and pack them in your carry-on, not checked luggage.
• Call hotels ahead about accessibility and comfort needs
• Get medical clearance and any necessary documentation
• Ask your doctor for a letter explaining your condition, medications, and treatment needs (especially important for security or customs).
• Check if your insurance covers you while away
• If traveling internationally, consider travel medical insurance
• Identify nearby clinics, pharmacies, and hospitals at your destination
• Build in downtime and don’t overpack your itinerary
• Plan travel during your best time of day (e.g., mornings if fatigue worsens later)
• Bring comfort items (e.g., neck pillow, compression socks, heating pad)
• Pack snacks and water, especially if you need to avoid certain foods.
• Stay hydrated & eat regularly
• On planes or long drives, stretch or walk when possible to prevent stiffness or clots.
• Don’t be afraid to ask for help – use priority boarding, mobility assistance, or hotel accessibility options if needed
• Listen to your body

Remember: pemphigus or pemphigoid is part of your story, but it doesn’t define your experiences. Be kind to yourself, build in flexibility, and don’t hesitate to ask for help when you need it. Most importantly, give yourself permission to find joy in the adventure – your way, at your pace.

Next Time: “Managing the Costs of Care”