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.
Kids can be picky eaters. When you have a child with CF and the nutritional stakes are higher, you may need some creativity to keep them interested.
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Moms with picky eaters, raise your hands, please! If you don't have your hands up, please come over to my house and teach me your ways. My son, Major, like many other toddlers, loves a food one day and loathes it the next. I'm constantly looking for new ways to get him excited about eating. It seems like after finding something he will eat up like an NFL lineman, he moves on. The only food that he hasn't grown weary of is Cheetos. Great for potty training, by the way.
Not only do I have to adapt to his ever-changing food preferences but also to his ever-increasing caloric needs. Because of Major's cystic fibrosis, his body doesn't absorb nutrients in his food as well as other kids. We give him enzymes to help with that, but he still requires the kind of fat and calories I could only dream of eating. Not only that but, as he grows, Major needs even more calories and fat.
The pat of butter in his veggies that helped his weight skyrocket as a baby doesn't cut it anymore. These days, it's layer upon layer of extra calories -- and then add something else just in case. Some time after Major started eating solid foods, butter crackers became our go-to base for a meal.
I didn't grow up as a member of the clean plate club, and I don't want Major to be one. Because there are so many potential issues associated with weight gain for those with CF, I'm very cognizant of creating healthy eating habits for him. It is important to have a healthy relationship with food. I certainly encourage him to put a dent in his meals, but I don't scold or punish him for not doing so. I don't hound him for every bite. I do offer new foods frequently, as well as empower him to choose some of his meals.
To be so relaxed about our mealtime attitude, I have to maximize each bite. And so, the butter cracker stacker was born.
Butter crackers started on the side of chicken nuggets, with either butter or cream cheese.
As Major's need for calories increased, I put canned chicken on top of the butter.
When he grew again, I buttered the cracker, mixed the canned chicken with avocado, and spread that over the cracker.
After many dinners of the “'cado salad” (as Major calls it) variety, I could see boredom beginning to set in. I needed something heartier, as did his waistline. Time for butter, avocado and chicken, and mayo.
Of course, mayo! Why didn't I think of this sooner? Upon realizing my brilliance, Major did me one better and discovered canned cheese. Rather than allowing him to spray it straight into his mouth, it now resides safely on top of his buttered, avocado-mayo and chicken topped cracker.
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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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.
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