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Traveling by Air When You Have Ehlers Danlos Syndrome

(Editor’s note: if you’re attending this week’s Global Learning Conference, you can find our tips here#DazzleVegas)

Traveling with Ehlers Danlos Syndrome, or any other medical condition for that matter, can be challenging. Whether it is physically getting around the airport, transporting medication, or making your way onto the plane, there are several accommodations you can use. Here are a few tips and pieces of advice to make your travel a little bit easier.

First, before every trip, make sure that you have a “TSA Notification Card” from TSA, or the Transportation Security Administration, which you can print online and carry with you at all times. This is helpful for you and the security agents to make sure that your medical conditions are known — plus it includes contact information for their TSA Cares department!

Transporting Medication

Many of us need medication and/or medical equipment on a daily basis. It’s always a good idea to pack your medication and medical needs in a carry-on so that it is with you at all times. You never want to be in a situation where your plane is delayed and you cannot access your medication that has been placed in checked luggage or have your bags lost with the medication inside.

When going through security, always notify the officers that you are traveling with medication. Whether you are traveling with pills, injections, or another form of medication, it’s courteous and helpful to inform the officers prior to your bag being scanned. Per the rules of TSA, all medications must undergo screening. Even for domestic travel, it’s a good idea to keep your medications in the original bottles and have a photocopy of your prescriptions on hand. This way, there is no question that these medications belong to you.

If you’re traveling with medication that needs to be refrigerated or kept cool, my best advice is to pack this medication in a soft, insulated bag or cooler. Because of TSA regulations on liquids and gels, I often pack an empty water bottle in the cooler bag and fill it up with ice once I get into the airport after security. You can typically get ice for free from any fast food store. (Fun Fact: If you want to pack an extra water bottle to drink from, Starbucks will fill up the bottle with ice and tap water for free!)

If you do need freezer packs to carry syringes, IV bags, creams, or gels, you should read about TSA’s regulations for those of us with medical conditions, 3-1-1 Liquids Rule Exemptions, and the processes they use to make sure we are kept safe! You may be subject to additional screenings and always have the right to do so in a private setting. I have personally undergone pat downs, additional screenings and inspections While frustrating, try to keep in mind that this is for our safety and it is always better to be safe, not sorry!

Getting Around the Airport

Every airport provides wheelchair accessibility and transportation to assist you in getting from check-in, through security, and to your gate. I recommend calling your airline ahead of time to ensure that they have wheelchair assistance arranged when you arrive. Not only is this helpful for getting to your gate, but they’ll also assist you from the gate down to the airplane, which can be quite steep. If you use their wheelchair services to get onto the plane, most airlines will also have a wheelchair waiting for you at your destination. If you have your own wheelchair, cane, or other mobility device, you can use them throughout the airport and up to the plane. Most airlines will allow you to check your chair at the gate free of charge, but it’s a good idea to call and verify with your particular airline before you travel.

Keep in mind that the airport can mean a lot of walking and standing. Airport security, food lines within the airport, and boarding can all require waiting in line anywhere from a few minutes to hours. Be realistic: Consider if your body will be able to withstand these conditions and make arrangements for a wheelchair if necessary.

SmarterTravel.com gives a few great ideas including:

  1. Call your airline at least 24-48 hours before your travel to ensure that the proper accommodations are ready upon your arrival.
  2. Be specific when describing your medical condition and what you need. This is not a time to “downplay the severity of the disability.”
  3. Pack extra medication in case of unexpected delays or medical emergencies.
  4. Carry a doctor’s note and your doctor’s phone number and always, always, ALWAYS carry medical alert information on your person!

Boarding the Airplane

How do I say this? Always use medical pre-board! Most airlines provide pre-board service to allow passengers with medical needs to board the plane before all other passengers for safety. Whether you need assistance or not, using the medical pre-board service helps you in several ways (depending on your particular airline): you avoid standing in line waiting to board; you can receive physical assistance getting from the gate to the actual plane; flight attendants are available on the plane to assist with your carry-on; you’re able to avoid getting pushed or bumped into by the crowd when boarding the plane; you may pick a seat that is best suited for your medical needs, whether it be an aisle seat or in the front of the plane. Please note that if you choose to use medical pre-board, there are limitations as to where you’re allowed to sit, for example, you may not sit in an emergency exit row.

So, how do you obtain a medical-pre-board? Some airlines, allow you to indicate a medical need when you book your flight which will then be noted on your boarding pass; other airlines allow you to ask for medical pre-board at check in or at the gate. Regardless, you can always call your airline prior to your flight or seek assistance from airline assistants at the airport.

Do you have to explain why you need medical pre-board? No. In most cases you should not need to explain your medical need. As with any other situation, you may find that people are nosey or ignorant of your medical needs. Do not let this deter you from seeking help! Medical pre-board and other assistance services are for use at your disposal – you know your body, never be afraid to ask for help!

Allergies and Immune System

It’s very important to make your allergies known, especially peanuts. Airlines, such as Southwest, which hands out snacks during flights, take special precautions to avoid airborne allergies. Remember that the air on planes cycle and even allergens from the back can make their way to the front.

If you have allergies and sensitivities in general, always have your Epi-Pen! It might also be a good idea to wear a filter mask. All it takes is one person who “forgets” and opens a bag of peanuts, soon enough you are having an allergic reaction. Filter masks are also helpful if you have a low or susceptible immune system. I have heard that Vogmask respiratory masks are a useful (and stylish) brand to use.

The more people you are around, the higher risk for infection or getting sick. It seems to be a rule of thumb that every time I travel, I get sick soon after. Remember that you are using a form of public transportation. This means that many people cough and don’t cover their mouths, some do not wash their hands, and airplanes are cleaned but not sanitized. I recommend washing your hands whenever possible and carrying a travel-size antibacterial gel for frequent use.

All in all, TSA, has special procedures in place for those with disabilities and medical conditions. If you have further concerns, they provide passenger support and trained support specialists. They recommend calling TSA Cares at (855) 787-2227 at least 72 hours before your flight with any questions. If you begin to feel uneasy, uncomfortable or unwell while traveling, find a seat and alert for help. Your safety is always the number one priority! Accommodations are put in place for a reason, we have the right to use them.

Share your air travel tips with other oneEDSvoice members on the community wall.

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