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.
Why do we feel like failures if we can't get our children to gain weight and have to concede the battle against the feeding tube?
September 10, 2015
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Her shoulder blades protrude, and I can see the outline of her ribs as she puts on her PJs. I am now acutely aware of what awaits me tomorrow in the clinic. The scale reprimands me before the team even has a chance to get a word in. Nourishing your child is a very basic instinct, and I am overwhelmed with feelings of failure.
Lung clearance is hard. Intravenous antibiotics are hard. Food is not supposed to be hard. That is why the emotions are so encompassing. However, the verity is that malabsorption is as much a part of this disease as bronchiectasis. What stops us from acknowledging the disease's role in this particular hurdle?
The war rages within me with each meal, each snack, and each high calorie shake mix that I begrudgingly serve her. I know that Maylie is fighting a war within her body each and every day.
I can choose to feed the soldier or feed the disease.
Each time I choose processed/high sugar foods to appease the numbers, I feel like I give the other side ammunition against my daughter. I stand here looking at a little girl that is doing everything within her power to fight CF every day, and my job is simply to support her.
A couple years ago, I attended the CF Foundation social worker/dietitian consortium where I listened to case study after case study presenting statistical evidence to support the correlation between BMI and lung function. I had heard parts of the same story so many times before, but it was in a setting that begged me to recognize the gravity of a situation I wanted to ignore.
Unfortunately, I spent Maylie's first three years in a state of misguided defiance. I would go to clinic prepared to defend my efforts as a mother. Unbeknownst to me, that was never in question. Failure to thrive is an extremely personal and emotional diagnosis, and one that gives you a false sense of control. Everything changed once I acknowledged that Maylie's need for a feeding tube was as disease-specific as her need for Pulmozyme. I was free from the guilt that blinded me all those years. Why do we see nutrition intervention as a reflection of our own failures?
Once the decision was made to follow through with the feeding tube, relief consumed me. This small war was over; I could stop fighting the tube.
Maylie has had her tube for almost four years, and while it comes with another set of demands and a few complications, it was one of the greatest tools that we have implemented into her CF care. If your team has discussed the tube with you, I encourage you to embrace the chance to have another weapon to fight CF. See it as a step up, not a step down.
Mother of a child with CF
Kat founded the Blooming Rose Foundation (BRF) when her eldest daughter was diagnosed with CF six years ago. The BRF was designed to empower parents whose children have been newly diagnosed with cystic fibrosis. She has served as a communication consultant to teams and advisory boards of numerous pharmaceutical companies as they develop education and empowerment tools for the community. She holds a M.S. in health communication from Boston University and a B.S.W. from Humboldt State University.
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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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