Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Don't wait until the last minute.
As fun and exciting as traveling is, it can also be stressful. In addition to managing the usual travel headaches, like flight delays and lost luggage, there are some important health-related considerations to manage when traveling with cystic fibrosis. Planning in advance can help your travels go as smoothly as possible.
Here are some steps you can take.
Several documents can make your travels easier, especially if you need to seek medical care while away from home. You can print these out yourself, but they require information provided by your doctor, so planning ahead is key.
Store these documents online in a secure, easy-to-access place. Make a copy of them in case you need to give them to someone. Keep the originals on your person or in a safe place -- such as the hotel safe -- at all times.
When packing your medicines, keep them in their original containers with clear labels to avoid drug mix-ups and, if you are traveling internationally, to show customs officials. Bring enough medications for your trip plus a few extra days in case you're delayed or your luggage is lost or stolen. You may also want to bring extra written prescriptions in case your supplies run out, but know that local pharmacies may have to order specific CF medications; this can take one business day or longer. If the pharmacy cannot fill the quantity of a prescription due to a limited supply, you can always request less than the amount written on the prescription.
If you're traveling internationally, your prescriptions may not be valid, and medicines that you can get in the United States may not be available in foreign countries. Before you leave, it's recommended that you contact the U.S. Embassy of the country you will be visiting to ensure that there are no country-specific bans on your medications and to get more information on the country's process for accepting medication. Call your pharmacist and ask him or her about ordering extra medications for your trip. Your pharmacist may even be able to ship extra supplies to your hotel or refer you to partnering pharmacies that carry CF medications.
Some people with CF may have issues bringing a large supply of liquid medications (such as nutritional drink supplements), so you may want to include why you need to travel with this amount in a letter from your health care provider.
You can never be quite sure where your luggage will end up, so be sure to pack all of your medicines in your carry-on bag -- not your checked luggage. Keeping your medications with you rather than checked and stowed will ensure that medications that must be kept at room temperature do not get too hot while taxiing on the runway or too cold during the flight. According to the Transportation Security Administration (TSA) website, if your medications do not fit in a plastic quart-size bag, they must be declared to the transportation security officer. Be sure to retrieve all of your belongings after TSA screening. Your medications do not count against your carry-on allowance of one small carry-on bag and one personal item.
If you have syringes and needles for injections, ask your doctor to write a note explaining why it is medically necessary to carry these supplies.
Request a refrigerator at your hotel ahead of time; there is not always an extra charge if you say it's for your medications. In hotels that do not offer refrigerators or mini-bars in the rooms, ask to use the hotel or restaurant refrigerator to keep your medications cool and to refreeze ice packs. Make sure to very clearly label your medications with your name, room number, date and the words “DO NOT THROW AWAY” in big, bold letters. However, because not all hotels will be willing to store medications in their own separate refrigerator outside of your hotel room, you may want to call the hotel ahead of time to make sure that they can adequately accommodate you.
If you're flying, please note that airplanes do not have refrigerators on board. If your medications need to be kept refrigerated, you might need to keep them in an insulated picnic or lunch bag with small ice packs or medical ice packs.
You may need to travel with a vest, nebulizer, portable oxygen concentrator, insulin pump or other medical equipment. When packing, remember to bring anything you need to operate your equipment, such as power cords, plug adapters or batteries. In addition, bring the instruction manual for your equipment in case it malfunctions while traveling. If you find that some of your equipment (such as your nebulizer system) is not compatible and does not work while abroad, Cystic Fibrosis Foundation Compass can help by working with the manufacturer on your behalf to ensure that you are only bringing systems and devices that will work outside the U.S.
Do not check your equipment -- always carry it on. This is the only way to ensure that it will not be lost or damaged. Again, your medical equipment does not count against your carry-on allowance of one small carry-on bag and one personal item. However, it must be able to fit either under the seat or in the overhead storage compartment. If you need assistance carrying your equipment on the plane and to your seat, ask the gate agent if you can pre-board. A medical equipment tag, identifying your machine as a necessary medical device, will help avoid any concerns about your carry-on items should you be asked by a TSA agent or flight attendant.
Though it is not required, it is a good idea to bring a note from your doctor explaining that the device is yours and that you need the machine for medical reasons. In addition, bring the prescription from your doctor for the machine. These documents can be particularly useful when going through security or when boarding international flights.
If you are traveling with a portable oxygen concentrator (POC), let your airline know at the time you book your ticket and again at least 48 hours before scheduled departure. You must also have a physician consent form completed by your doctor; these forms are available to download and print from airline websites. Upon boarding, you will have to show the form to the flight attendant, as well as the pilot for verification.
Sometimes the type of airway clearance technique (ACT) you use at home is not the most convenient for travel. For example, your vest may be too heavy to travel with or the person who performs chest physical therapy (CPT) may not travel with you. Talk with your CF care team about alternative ACTs or smaller devices for travel. If you want more information on the cost or coverage for new devices, Compass can work with you by contacting your health insurance provider to investigate what exactly your plan will cover.
If you want more information on the cost or coverage for new devices, Compass can work with you by contacting your health insurance provider to investigate what exactly your plan will cover. To contact Compass, call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
If you need to use your equipment in-flight or at a connecting airport, aim to have 50 percent more battery power than you need for your flight in case of delays. Most planes do not have electrical outlets to charge your equipment.
If you are traveling to another country, you should make sure your equipment has the right voltage for the country you are visiting. This is because different countries provide electricity at different voltages. Talk to your CF center about borrowing a nebulizer or oxygen concentrator with the right pump voltage, if you don't already have one. You may also be able to use a converter. For any electrical equipment you use, you may need to bring a plug adapter. An adapter enables you to fit a plug into outlets designed for other shapes of plugs. A surge protector is a good idea if you are traveling to an area with unreliable power quality. Converters, adapters and other electrical equipment can be purchased at most travel or luggage stores or electronics stores.
If you need help while traveling, assistance is available before, during and after your flight. You can request a wheelchair at no cost to you when booking your ticket or when you arrive at the airport. Airline staff can then wheel you to your gate and help you board the plane. This is particularly helpful if you have extra baggage due to medications or equipment. You can also request to pre-board the plane if you need extra time to get to your seat and stow your carry-on items. If you think you may need assistance, it's best to make arrangements for assistance before your trip begins.
Bring along a prepaid phone card to contact your own CF center for advice in an emergency. These cards are good to have if your cell phone does not work. If you are a U.S. citizen, you may want to take along the phone number and address of the U.S. embassy or consulate in your destination country in case you need the name of a doctor to contact after you arrive. While abroad, you can obtain the location of your nearest U.S. embassy or consulate by calling 001-202-501-4444.
For people with CF who live outside of the U.S., traveling to the States for vacation, university or an extended stay also requires preparation. Prior to your departure, it is important to talk with your CF care team so that you can work together to get any necessary vaccinations, medications, therapies, clearance and coverage for care. In addition to the information about various medical aspects involved in traveling with CF, your care center should also be able to provide you with information about local CF care options and help you develop a plan for emergencies.
To further coordinate your care while traveling to the U.S., you can look up the state that you are visiting using our “Find a Care Center” tool. Once you have selected the state from the pull-down menu, contact the center that comes up in the search results and ask a list of key questions to ensure that you can utilize the center as a resource and receive any necessary care. Typically, the program coordinator or another member of the CF care team can provide you with important contact information or explain the options available for international travelers in need of emergency CF care.
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