Air Travel Tips for EB Families
  1. Plan ahead. Call your airline provider ahead of time to ask for assistance getting into the airport, through security and onto the plane. When you book your flight online, you may indicate that you have special needs. Also, check the TSA website for any changes in security measures.

  2. Carry a doctor's note. Dr. Kara Shah, a consultant for EB Nurse explains. "The power of a doctor's note is that it can help you explain to anyone as to what your special needs are," Dr. Shah adds. "Keep it brief. Tailor it to what you need it for: You're on an airplane and you need to bring medicine and dressing supplies. Whenever you're dealing with a skin disease that the general public doesn't know about, it's important to say something as simple as this skin condition doesn't put other people at risk for infection and is not contagious." Dr. Shah also recommends carrying a folder in your suitcase that contains more detailed medical information such as a list of medications, allergies, doctors and medical history. This information could come in handy in case of an emergency while you're away from home.

  3. Speak up. When you encounter assistants at the airport, tell them that you need help and explain how you need them to help you. When going through security, ask airport employees to be gentle on certain body parts and explain why this is necessary. This is also the perfect time to mention if you have had surgery recently or if you have a feeding tube.  

  4. Pack light. Pack the essentials and do so ahead of time. Label all bags with your name. Store liquids and gels in 3.4 ounce bottles or less in a clear, plastic zip-top bag. 

  5. Travel off-peak. Book very early or very late flights to avoid crowds. If possible, don't travel on the days immediately before or after a holiday. 


More Travel Tips

Do you find yourself confused about carry-on rules, specifically what you can and can't take aboard an aircraft? The following should clarify the current requirements for our EB families.

The U.S. Transportation Security Association is enhancing security throughout the airport environment, especially in areas of staffing, canine patrols and proof of identify. There is good news for the EB community in the current atmosphere. A coalition of over 60 disability-related groups and organizations was established to help the TSA understand the needs and concerns of people with disabilities and medical conditions. They have established a program for screening persons with disabilities and their uniquely associated equipment, mobility aids and devices.

It's a good idea to be prepared before you arrive at the airport so that you can move efficiently through the security process. Try to pack everything you can in your checked luggage. Have your airline boarding pass and government-issued photo identification available until you have passed through the security checkpoint.

Before the screening process begins, you may want to request a visual inspection of any medical supplies. This is your choice. A visual inspection should be requested before the screening process begins; otherwise, your medications and supplies will undergo the X-ray process. Explain at the outset if someone needs to be handled gently. Let the officer know if you are in pain, so that they will proceed with exceptional care and avoid sensitive areas.

Unless you have a disability, you are required to remove your shoes and put them on the conveyor belt. People with a disability, medical condition or prosthetic device do not have to remove their shoes. However, you'll be subjected to additional screening, including visual and physical inspection, and explosive trace detection while your footwear is on your feet. If you decide to remove the shoes to avoid that, you will want to wear cushion-sole socks. and be extra careful walking on slippery surfaces.

Disability-related items allowed beyond the security checkpoint include, but are not limited to:

For those with bandages, if the area of a dressing sets off an alarm, a gentle, limited pat-down of the dressing area over the top of your clothing will be conducted.

On to the carry-on bag! The secret to getting through security in as painless a manner as possible is to de-clutter. Notify the screener that you are carrying supplies related to your, or your child's, medical condition. If possible, have a note or card with you along with any supporting documentation, describing the form of EB, and listing items that may be necessary to your or your child's health. It would be prudent to ensure that the name on medical prescriptions matches the name on the boarding pass, or explanations will be necessary.

Limit quantities to what you'll need for the duration of the flight, and in an emergency if your baggage arrives late. Travel-on liquids, aerosols or gels (medications, eye drops, etc.) must be in containers sized three ounces or less, and packed into one transparent, plastic, quart-size zip-top bag. Have it packed in advance, and clearly label items so that they are easily identifiable (while the TSA does not require a label, they recommend having the label available to expedite the screening process). If you don't require a visual inspection, remove the zip-top bag from your carry-on at the checkpoint, and place it in a bin or on the conveyor belt.

Make sure all containers in the zip-top are three ounces or less. You are not limited in the amount of larger-volume medical supplies or liquid nutritional items. However, these must be declared individually at checkpoint and are subject to additional screening. Separate those larger containers in the carry-on bag for easy access and inspection. Be prepared to show the larger-volume items to the officer. If you have an immediate need during screening, don't hesitate to ask for a screening supervisor. In order to prevent contamination or damage to your medications and associated supplies, plan to display, handle and repack your own items during the visual inspection process.

As for sharp items, be judicious and take only what you must. A bandage change is unlikely, but if you are concerned about wound seepage, try to cut dressing materials in advance and avoid bringing sharp items. Knives are prohibited, except for plastic or round bladed butter knives. Safety razors, including disposable razors, are allowed in your carry-on. Scissors are prohibited, except for plastic or metal ones with a blunt tip, or if they have pointed tips, the blades must be shorter than four inches. Again, be prepared to present these to the screening officer.

You can call the TSA Contact Center to obtain additional information by phoning toll-free 866-289-9673, or have a look at the websites listed below.