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 people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
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.
After what seems like an hour and too many clicks to count, you finally did it. You booked your flight! A couple weeks leading up to your departure date, panic starts to set in. You go into operation “no one better get me sick” mode.
August 25, 2015
A Tot, Travels and Cystic Fibrosis
Stacy Motenko on Managing CF While Traveling
Let's be honest, CF doesn't care if you have a ticket to a far away land. I actually think after you book that flight a signal shoots out to the cystic fibrosis universe and says, “This would be the best time to strike.” Little does CF know, we are stronger than that.
Flying can be very stressful for anyone. Add CF to the equation and it only makes it more challenging. I do believe, however, that part of that CF gene inevitably makes us always up for any challenge that is thrown our way.
Some tricks of my trade?
I have some mad packing skills. I seem to always manage to fit everything into a carry-on. That might not seem impressive to the average Joe, but when your suitcase looks like you're about to run off and join “Doctors Without Borders,” trust me, traveling with just a carry-on is a huge accomplishment.
Pack outfits that are versatile and interchangeable. Wear your bulkiest outfits and shoes on the plane. I'm blessed to be able to stay with friends and family, so I can usually do laundry on my trip.
You're allowed to have a carry-on that is all medical, and this does NOT count as a normal carry-on. I wear O2 on the airplane so my portable concentrator and its bag of batteries is my extra medical carry-on. It has a cart that it sits on with wheels. Over that handle, I include my little cooler of meds, and together that counts as my one medical carry-on.
A lot of CF moms are stressed about taking the vest on the plane. The vest can act as a carry-on just like my O2 concentrator. I will give you a tip, though. If your child will allow it, and you don't mind doing it, throw it back to the days before the vest and use good old fashioned hand CPT...Your hands don't take up any extra room to pack.
In my suitcase I have all my pills, supplements, nebulizer and disposable neb cups. I find disposable cups easier to use while traveling. (Plus, throwing them away rather than having to sterilize them is a very liberating feeling!) Some days I do four different nebulized medications, so that's a lot of neb cups. They take up space, but I take them out of the original packaging and throw the tubing out. I then put them all together and throw all the neb cups in one giant plastic bag. They take up a good chunk of my suitcase, but imagine all the room I will have when I return.
If you need oxygen for the flight, you need to contact the airline ahead of time. Each one has different requirements. Some require a doctor's note and some require your doc to fill out a note they provide on their website. I believe Delta is the only airline where you have to get your oxygen pre-approved through a company called Oxygen To Go. The instructions on how to do that is on their website.
You can't take oxygen tanks on airplanes so you need to have a Federal Aviation Administration (FAA)-approved oxygen concentrator (you can contact your oxygen provider on how to rent those). I believe that you have to book those pretty far in advance, so as soon as you know you're about to take a trip, make sure you start working on your oxygen requirements.
On the days you travel, you might want to load up on Vitamin C to keep that immune system nice and strong.
I have one word for you: pre board. Well, technically that's two words, but you will definitely want to take advantage of that. As soon as I board the plane, I go on a cleaning frenzy. I bring disinfectant wipes and wipe down everything my body touches. More often than not the wipes are filthy…So gross!
I turn off my air, because who wants recycled air constantly blowing down on them? Not me! I have to sit in a window seat because I fly with oxygen, which is the rule for all airlines. I get situated with Purell in one pocket, my pulse ox in the other and my mask on my face...Yep, I wear a mask. I'm not sure if it really helps, but it seems to help me, and nobody wants to sit next to me, which is an added bonus. So even if you don't have CF and you want a little extra leg room, start wearing a mask. You can thank me later!
When I have finally reached my destination, I try to do a sinus rinse as soon as possible and gargle with warm salt water. The salt water helps prevent proliferation of any bug you might have come in contact with, and it's very effective in bringing down viral population. It's an inexpensive yet powerful preventative method.
If your child is younger and can't do either of those things, warm liquids are also very helpful. I'm sure they wouldn't mind drinking a hot chocolate; plus, the extra calories will be helpful! If they haven't yet started sinus rinses but they do hypertonic saline, you could use the mask attachment with the hypertonic. It will help clear out their nasal passages so they can blow their nose really well after that.
Have fun!! Traveling is so amazing. I believe it is the one investment where you get more than your full return. So put down that phone, disconnect and reconnect with those around you and your new environment. Make new memories that will last a lifetime. Breathe it ALL in, enjoy yourself and remember to be in the moment.
Adult with CF
Somer was diagnosed with cystic fibrosis at 11 months in 1980. She tries to live each day to the fullest by keeping her hopes high and dreams big. Somer is an active advocate in the CF community who has spent her life fighting the disease alongside her parents. Follow Somer on Love To Breathe.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails