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.
At a CF care center visit, I realized that I needed to step back so my daughter could step forward.
June 1, 2016
What I’ve Learned About Care as a CF Patient and Hospital Administrator
WATCH: Carrie Giddens and Her Journey to Becoming a Mother
My mind races. My heart aches. I have read five chapters in a book that I couldn't even summarize for money. I honestly couldn't even produce the title if need be. I sit patiently, waiting for my name to be called. I have been waiting almost two hours; it seems like lifetimes. I finally conclude that no one actually needs me.
I grapple with the emotions I am experiencing right now. What is this feeling of loss? I wonder if it is lack of control, missing the interactions with staff or maybe it is simply frustration that I have been following an unspoken protocol, ignoring that my daughter was ready to fly solo. I have spent the past 10 years trying to protect my daughter from the “unspeakable” by being her advocate. I now question if I have been misguided. Maybe the best way to be her advocate is to recognize that she has the tools to advocate for herself.
After realizing this, my mind becomes calm and my heart takes on a feeling of pride rather than loss. I realize that today, after she was asked a very simple, yet life-changing question, “How have you been feeling?” for once she didn't look to me to answer.
I am not there.
She is given this rich opportunity to think about that question, assess what that means to her and respond as the true expert in her life. How empowering.
The reality is that my intelligent and capable daughter has brought a book to clinic because I have been her voice. Other than the exam and PFTs, she actually has not needed to attend clinic because I have been so thorough in reporting the nuances of her life. My controlling nature comes from a place of love, making sure that I have ample opportunity to articulate what I observe, voice my concerns, ask questions about the unknowns in an effort to be an advocate for my daughter. As though that will somehow give her an edge to fight this unforgiving disease.
I now see that my need for control runs the unintentional risk of teaching Maylie that she is simply a bystander in her own care. I come to a modest yet poignant realization. We have the opportunity as parents to demonstrate our love in an entirely supportive way, more as a coach than as a leader. I have shown her my dedication to managing cystic fibrosis by never missing treatments, by attending all her clinic visits and by being her advocate in the seven years since her diagnosis. It is now time for me to allow her to become the expert.
I am telling May through my actions that I believe in her ability to be her own voice and that I trust her to take care of herself in a world that is frightening and overwhelming … but a world that is hers.
CF constantly reminds me how little I know. In this moment before she finds her way back to the waiting room, I finally realize my role: to support my daughter on her journey, living with a chronic disease. That role will constantly evolve as she grows. Sometimes it is hard to keep up with how quickly she advances. Sometimes I think that she needs me more than she does. Sometimes I want her to need me.
Seeing her come out of the clinic room, full of pride, brought immediate clarity to what it is going to take to raise a healthy and happy individual living with such a complex chronic disease. Empowerment. We all want to be an expert, to be revered, to be seen as capable. I look back at all the steps toward independence that Maylie has taken since her diagnosis, and I am certain that she is ready for this transition into self-care. She cannot wipe the smile off her face. She is an expert in her own life. Finally.
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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