Tips for Traveling with EGIDs

For the family that has a member with EGID, traveling can be challenging. Here are some tips that can ease some of the travel burden and pave the way for a smooth trip.

Planning Ahead

    •    Create a menu plan before you leave. Easy and quick meals that can be doubled for leftovers are great when traveling. Recipes that use similar ingredients will make it easier as well.
    •    Check online to find any stores you regularly shop close to your destination. You can then call that specific location to see if they carry the main products you will need.

    If you are traveling outside your home country, make sure to see if you can find “safe” food while away. Countries have different rules and regulations on what ingredients need to be listed on food packaging. Your “safe” crackers in your home country may not be safe for you in the country you are visiting.

  •    Ship formula to your destination so that it will be there when you arrive (if you are staying in a hotel, contact them beforehand to make the necessary arrangements).
  •    If you will be on the road, cook food ahead of time and keep it in a cooler with ice or dry ice.
  •    Carry medical information in a folder in case of an emergency, and wear medical identification jewelry. You might also consider sewing a patch to the seatbelt of the patient that directs emergency personnel to the medical information folder.


Tips for Flying Commercially

  • When choosing an airline, find out their policy for on-board snacks/food and how they handle allergies on the plane. Ask about accommodations for dietary restrictions.
  • Review the policies and procedures of the Transportation Security Administration (TSA), particularly the “Travelers with Disabilities and Medical Conditions and the “Permitted and Prohibited Items” pages. All medications, formula, etc., above the allowed travel size must be disclosed to TSA.
  • Most airlines will allow one free medical supply bag per person. Call the airline you are flying with to confirm the specific rules they have. Be sure to pack all your medical supplies, prescriptions, and/or formula in a carry-on bag in the event your checked luggage is lost. This is also a good reason to keep 24 hours of any safe food in your carry-on as well.
  • Ask your doctor for a signed letter confirming the medical necessity of any pump, formula, and medications. Be sure to include the actual travel dates in the letter. The Oley Foundation has samples of letters for those with tubes or IV feedings.
  • Carry medical information in a folder in case of an emergency, and wear medical identification jewelry. You might also consider sewing a patch to the seatbelt of the patient that directs emergency personnel to the medical information folder.
  • Allow yourself extra time to get through security with medical equipment and supplies. When you arrive at the first security checkpoint, tell the agent that you are carrying medically necessary liquids/supplies. Some airports have lines specific for those with medical needs.
  • If you take formula in suitcases, know that the pressure of air travel can cause them to “pop” when you open them. Formula and medications can be stored in plastic bags inside the suitcase in case something bursts.
  • Call stores in the area you will be staying to see if they carry “safe” foods you may need. Some stores will even hold the food for you. Also, contact area restaurants to see if they can accommodate your needs.



Travel Assistance for Medical Care and Flight Sources

  •    Air Care Alliance(1-918-745-0384) offers a comprehensive list of charitable flight organizations for those with medical needs. Fill out the request form with your detailed information, and they will connect you with the appropriate organizations in your area who can serve your need.
  •    Air Charity Network (1-877-621-7177) has a map of the regions serviced by specific volunteer flight organizations as well as their contact information. Many regions are serviced by Angel Flight, which is often comprised of volunteer private pilots using their personal small planes. Due to the size of the planes, weather and weight restrictions are a factor.
  •       Corporate Angel Network (1-800-328-4226) offers flights specifically for bone marrow recipients and donors (applicable to eosinophilic blood disorders). No financial need required.
  •    HopeAir (1-877-346-4673) arranges free flights for Canadian patients in financial need who must travel for healthcare.
  •    Mercy Medical Angels also offers referrals to multiple providers of charitable travel for medical purposes, both air and ground.
  •    Miracle Flights for Kids (1-800-359-1711) will fly a child patient and his/her parents (no extra family members/siblings) for medical care or even second opinions. A doctor must sign paperwork within 60 days of the flight, and application/paperwork must be received a minimum of 10 days before departure date. They also require an original picture and personal story about the patient.
  •    National Patient Travel Center is an online referral service to multiple providers of free or discounted flights for medical travel. They also offer ground transportation assistance.
  •    Patient Airlift Services (631-694-7257) or “PALS” is a medical transport service offering free flights based from, or flying into, the Northeast US region.

Accommodations/Lodging Tips and Information

  •    If you are traveling to a particular hospital, ask their care coordinator (or equivalent) about lodging and transportation. Many hospitals have arrangements with local hotels for medical discounts and can provide you with a list.
  •    Many hotels have refrigerators and microwaves available, even if the standard rooms they offer do not usually offer these amenities. Consider calling and requesting these items ahead of time so that they can have it plugged in or cooling before you arrive.
  •    If you will be staying in a hotel, call ahead and request a microwave, refrigerator, clean plates, and utensils.
  •    If the hotel offers food options, speak to the head chef to see if they can accommodate your dietary restrictions.
  •    When making a hotel reservation, notify them if you have allergies to down, pets, or latex.
  •    If you are traveling with a feeding tube, plastic trash bags under sheets make good bed protection when “feeding the bed” is a concern.

Bridgestreet Accommodations

Bridgestreet Accommodations is a corporate housing company that makes their properties available to the medical community. All of the accommodations are fully furnished 1, 2 or 3 bedroom apartments, but are not necessarily near a hospital. Bridgestreet has some contracts with various hospitals around the country for discounts to traveling families. Please inquire as to whether they have availability at your required destination.

The Healthcare Hospitality Network
The Healthcare Hospitality Network provides “Hospital Hospitality Houses” (HHH) which are free or significantly reduced-cost lodging to patients and their families while receiving medical care away from their home communities. Unlike a hotel, HHHs provide opportunities for those going through similar stressful situations to come together as a community where they can support one another. HHHs have shared kitchens, common living areas and private bedrooms just like a home, creating a warm and comfortable place far from home.

Ronald McDonald House
Ronald McDonald Houses provide temporary housing for families traveling with children for pediatric medical care. RMH are near many major medical centers. For more information, or to find a RMH, visit the Ronald McDonald House Charity website


Car Rental

Enterprise Rent-A-Car 5% discount for APFED members use ID#: 17C6848 PIN: PCV