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.
I have spent many days trying to impart my commitment to my daughter in her fight with CF but, in the end, she feels alone. I take a moment to reprimand myself for forgetting the importance of teaching through example. Then, I focus on change.
October 23, 2015
To Travel is to Live
The morning started like most mornings. I hide under the covers in painful denial of the choice that I must make: getting up and exercising. I am acutely aware of the countless benefits, both physically and psychologically, yet the covers and the comfort of my bed often win. The sound that finally brings me upright is the familiar series of coughs from the bedroom next to mine.
It shakes my body to the core, reminding me that even on Christmas morning, cystic fibrosis does not take a break. She wakes up with a smile, looks at me with those beautiful blue eyes begging for reprieve and says, “Momma -- it's Christmas, do I have to do treatment today?” I gave her the same rote response that always follows this type of question. I envelope her in a hug, and when I pull back she looks at me with the sincere naivety of a child. A small tear falls down her face as she says, “I know, but it's not fair because no one else in our family has to do something every day.” She runs upstairs, and I sit with my own tears and emotions for a moment.
I start thinking about the beautiful view that carries me along the run at my parent's house on Flathead Lake. Motivated by the view swirling in my head, I decide to put on my much-neglected running shoes to clear my head. I immediately feel the cold penetrate my lungs: tight and uncomfortable. My shoes hit the icy pavement with rhythm and steadfastness. I decide where to turn around based on the reward of viewing the overlook of the cherry orchard with the lake spanning the eye's view. As I run up and down the hills along the lake, I think of nothing other than my daughter's comment to me.
I have spent many days trying to impart my commitment to her in her fight with CF but, in the end, she feels that she is the only one sacrificing. My heart aches with grief that she feels so alone. So I make a decision, and just not a New Year's resolution that will be fickle and will eventually fade. I make a commitment to my daughter, my hero. I will be her role model. I will become her partner in her fight against CF. I will exercise every day, not because I want to, but as a testament to my daughter and the hurdles in her life. I take a moment to reprimand myself for forgetting the importance of teaching through example. Then, I focus on change. Any time my adherence waivers, I will look to her commitment and it will be my new motivation. She gets no days off, has no immediate rewards and yet day in, day out, she follows the treatment plan that has been chosen for her.
I pick up my pace as I am about to reach the top of the final hill and the view that awaits me. As I arrive, my heart sinks. The fog still hovers over the lake and orchard, and all I can see is the fence surrounding the apple trees. I want to stop and cry at this reward that I cannot claim. I immediately realize that this anticlimactic end is more common than not for my daughter. She often sees the course that lies ahead, but then something, like a bacterium, is introduced and additional treatments are thrown at her. More antibiotics and GI distress follow, and doctor's appointments take over where play dates should be.
Today marks the first day of the rest of my life. And I will use it to encourage and lead my hero through the foggy views that lie ahead.
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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