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.
There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.
January 12, 2016
Teaching My Kids About My CF
Meet Wes Parsel
Her eyes dart rapidly, like a wild animal, scanning for potential predators; they land upon mine, only for a second. Her face is a reflection of the fury that exists within, her inability to trust anyone -- even me. I reach for her with motherly compassion, and she pushes me away. At 9 years old, she has learned distrust from the countless similar moments that have flooded our lives since her cystic fibrosis diagnosis. Today she sees me as an enemy, as much as any unfamiliar nurse who enters her room, maybe even more so.
Maylie's cynicism for me is grounded in experience. Reality is harrowing for her. She knows that, when necessary, I will abandon the maternal commandment to protect her. Her distrust has come from countless procedures associated with her CF. Although I understand that they are all necessary and for her greater good, she has experienced fear, pain and distrust. She has learned that I will betray her through my participation.
She knows that if the situation deems it, I will be forced to ignore her screams and perform a role in which I seem almost robotic. I hold her down, attempt to calm her, and worst of all, I consent. I consent to her body being violated, her wishes being ignored and her all-important voice unheard. She is no longer a person. She is a patient.
Someday she will understand my motivation, but today she does not.
After the procedure, she looks at me in disbelief. She stares deeply, reaching into my soul and then she asks the question I silently begged her not to ask, “Did you know they were going to do this to me?” My eyes well, my heart sinks. I nod feeling the fear of my admission. Her eyes squint from the pain of betrayal, and she says, “I hate you for this.” Any small ounce of strength that I was able to muster up for this day has been depleted three times over. I sob like a child, apologizing over and over. The nurses try to console me, explaining that she doesn't mean it. And while I want the reassurance, their words are useless. I have failed her. She was in a living hell, and I did not save her from it. I could not.
The following week, I grappled with immense sadness. I lost my former self; I was simply a shell, walking blindly into the unknown. A part of me died that day, and rebirth of that fragment of my soul is impossible. There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times.
Through this journey, I have learned that protection is redefined in chronic illness. It is often making choices that are painfully unfair; choices that will make us betray our own children. However, it is our strength that commands us, otherwise we would run. Every part of my being screams to flee the procedure room, but I stay, hoping that my presence brings Maylie even one second of calm. And for that I am strong. We are strong.
Almost a month has passed, but the pain of that day never subsides. Nor does the fear of the next procedure, because another one is always looming in the distance. I have begun to question my role in her care. I feel unnervingly apprehensive. What if my perceived strength is, in fact, unnecessary? What if I could be the calm within her storm rather than another funnel cloud hovering over her bed? I recognize in this moment that a better option exists; I will search indefatigably until I find it.
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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