Think Twice Before Skipping Spring Break

Don’t miss out on making memories; use our traveling tips for rare disease patients.

Notebook, pencil, and cup of coffee laid on top of map of Colorado

Planning a trip can be an exciting, yet stressful experience. The added challenges of traveling with medication and equipment may prompt some rare disease patients and their families to simply stay home to avoid the hassle. But with some planning and preparation, there are ways to get yourself on the road and on with the fun. We have expert traveling tips from globetrotting Alpha-1 patient Karen Skalvoll, the U.S. Transportation Security Administration (TSA) and Andrew Garnett, whose company, Special Needs Group, rents medical equipment to use on vacation.

Plan Ahead: Before booking your trip, do some online searching to find out what kind of accommodations and medical facilities are available along your way. Disney Parks, Universal Studios, Six Flags and other major theme parks have detailed information for visitors with specific needs as do nearly all major airlines. Depending on your condition, Karen says you may want to give some thought about how the climate may affect you at your destination and plan accordingly. When packing, she says it’s important to put all of your medication and medical equipment in your carry-on bag if flying.

Do Your Homework: Prior to heading to the airport, take a look at the rules for what can be brought on the plane. The TSA and European Commission, for example, have helpful online lists of what’s allowed and what’s not. Most items, including syringes and liquid medication, are fine. Oxygen tanks aren’t allowed, but specific models of portable oxygen concentrators generally are. TSA spokeswoman Lisa Farbstein suggests checking with your airline for its specific policy before your flight. The European Lung Association has a comprehensive list of airline oxygen regulations on its website.

Share Your Plans: Giving advance notice of your travel plans and your accommodation needs can help eliminate some of the hassle during your trip. Some cruise lines even require advance notice in order to accommodate passengers. Airlines can prepare for special boarding or seating arrangements for your flight. In the U.S., you can tell the TSA you’re coming by calling the agency at (855) 787-2227 or emailing TSA-ContactCenter@tsa.dhs.gov. Getting in touch ensures passengers will have “fewer surprises” at the airport, says Farbstein. Also, the TSA may be able to provide you with a Passenger Support Specialist trained to work with people with special medical conditions. 

Get A Doctor’s Note: A letter explaining your condition from your medical provider on official stationary can be a useful tool to secure special accommodations on planes, cruise ships or in theme parks. Some carriers may want you to send them documentation ahead of time, but Garnett says it’s a good idea to have a hard copy with you on your trip. TSA workers will also take a look at any notes passengers may bring with them, Farbstein says, but fliers should still expect to undergo screening. 

Buy Travel Insurance: For people with serious medical conditions, Garnett says travel insurance is a must. Insurance can help you recoup your money if you have to cancel your trip for medical reasons. And if you have a medical issue while on your trip, your insurer can serve as an advocate to help you get the best possible treatment. Without it, Garnett says, “you may be at the mercy of whatever medical services are there and at whatever prices.”

Don’t Be Intimidated: “Not only is it possible for you to make these trips, but it’s also fun,” says Garnett. Karen Skalvoll adds that even though traveling with a rare disease takes some extra time and preparation, it’s worth it.

“Be proud of what you can do when you’re not afraid of your limitations,” she says.