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.
Now that summer is upon us, you may be planning your next vacation. Although cystic fibrosis can make things a bit more complex, these eight tips can help you or your kids avoid as many germs as possible while traveling.
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Summer provides the opportunity for travel and more time for family fun, but when you have cystic fibrosis, there's no taking a vacation from doing treatments and being cautious of germs. Having CF doesn't mean you can't travel, but it's helpful to have a plan in place for staying healthy before you hit the road.
Whether you are planning to do your nebulized treatments in New Zealand or are packing extra enzymes so you can eat all the food at Epcot, here are some tips for staying as germ-free as possible when traveling.
This seems like a no-brainer for anyone in the CF community, but you can easily lose your trusty hand sanitizer when you are packing luggage, car seats, beach chairs, a week's worth of snacks, plus the family dog into your car.
I always keep a few bottles handy in my car's cup holders or in my bag or purse, and make sure they are easily accessible for any sneeze, nose-pick, or public restroom experience you'd like to forget.
This is nearly impossible when traveling with kids, but we do our best to time our bathroom breaks at restaurants rather than gas stations. This is because, inevitably, whatever gas station we stop at won't have soap, which is this CF mom's worst nightmare. Again, keep the hand sanitizer ready for a Purell™ bath between pit stops because you can't always predict when nature will call.
Do your research on your accommodations so you know what kind of amenities you will have before you get there. We almost always prefer to rent a house over a hotel because we know that we will not only have more space for treatments and our wild children, but that we will also have a kitchen for sanitizing respiratory equipment.
In addition, I always read reviews and try to confirm we are renting from a property management company because I know a property company will most likely use a cleaning service between renters.
Even the fanciest and most exotic locations are germy. Before I became a mom to two children with CF, I was already grossed out by travel germs from watching too many “what's hiding in your hotel room?” news features. That's why I bring disinfectant wipes and spray with me on vacation.
I feel better letting my kids roam once I've wiped down counters, furniture, and door knobs. I'm pretty sure most places are cleaner when we leave than when we arrive. Wipes are also great for disinfecting restaurant tables, highchairs, and airplane tray tables.
There's no shame in wearing a mask when partaking in public transportation or when you find yourself in places where the air quality may not be pristine.
We were on vacation in the mountains during some wildfires a few years ago and felt better knowing we had a mask for our son to wear when we were outside. Make a family pact to all wear masks together if your kids don't like wearing them.
In addition to bringing more medication than you will need, remember to pack supplies for cleaning and sanitizing nebulizers.
Alcohol wipes and disposable neb cups can save time while on the road, but we try to pack the steam sanitizer and drying rack if we are staying anywhere for more than a few days because it's just more convenient than boiling water. Although you can also bring microwavable sanitizing bags, be sure to test them before you leave to make sure they don't melt or damage your equipment.
Always rely on the good old-fashioned method of germ prevention by washing your hands throughout the day and before meals. If you aren't sure you'll have access to a sink, you can bring a handwashing station with you on the go by packing a jug of water, soap, and paper towels.
Recognize that your risk of getting germs on vacation is the same as your risk of getting germs in everyday life, so if you are taking the same “stay healthy” precautions that you've adopted at home, you'll be just fine. Take your medicines, hydrate, do your treatments, wash your hands, and enjoy your vacation.
With that, my family is ready to hit the beach next week! Where are you traveling this summer and what are the ways you stay as germ-free as possible?
Mother of two children with CF
Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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