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.
Listening to my body -- and hearing what it has to say -- is not always what I want to do, but what I need to do.
September 2, 2016
Why We Decided Not to Have Kids
Changing Perspectives: Lessons of a CF Caregiver
Waking up with the first signs of a cold is no fun for anyone. My first thoughts might be “do I call out of work, or do I ride it out and mask the symptoms with medicine?” Unfortunately, waking up with cold symptoms when you have cystic fibrosis tends to be more complicated. The course of action may not be as simple as calling out of work for one or two days; and riding it out is not usually the best option. What if things get worse? With the many battles I have faced against CF, I have learned that being in tune with my body and addressing what I need to take the best care of myself is vital when living with chronic illness.
With changing seasons and environmental factors at home or while traveling, I often find it difficult to pinpoint the cause of symptoms. Why do I feel like I'm breathing out of a straw this week? Why am I beyond exhausted today? I consider the elusive answers to these questions my nemeses. As I've taken more control of my health in recent years, instead of trying to make sense of the minutiae, I've found that I'm better suited focusing on what I know are the best decisions for me. If I have more congestion than normal, I work extra airway clearance into my schedule. For me, sometimes the solution is as simple as finding time in the day to just breathe.
Unfortunately, these more straightforward tasks don't always cut it, and it is my responsibility to recognize this and act accordingly. In the past year, I have sensed something brewing several times but was unsure of the cause. It is natural for my mind to automatically fear infection, intravenous (IV) antibiotics and hospitalization. I had a long and tedious cycle of this for almost two years, and I will do whatever it takes to try to avoid that downward spiral again. My first action is to contact my doctor and explain my symptoms in detail. Often, going in for a visit is best. Recently I experienced inflammation very soon after a three-week course of IV antibiotics, which caused other uncomfortable side effects, not to mention frustration. My doctor changed my medication regimen, and things quickly turned around. I trusted my body was telling me that something was wrong, so I chose to be proactive, rather than let the situation get worse.
I have also learned that living with CF is not usually about doing what's easiest. It's 9 p.m., I've had a long day, I have not washed the dinner dishes and the last thing I want to do is an hour of airway clearance. But the reality is that every treatment keeps me at my healthiest. If I miss a treatment (I'm only human, after all), I can almost always feel the repercussions. My body is used to being taken care of, and like a newborn baby, it will cry for help if I don't nurture it.
Sometimes the decisions we face are tougher than “to vest or not to vest.” The decision to go on IVs or be admitted to the hospital can feel like a relentless struggle with my own mind. The sacrifices I often make for my health can seem never-ending, and in turn, discouraging, upsetting and even depressing. I have come to terms with making my health my number one priority, because in the end, the consequences will outweigh the disappointments. And believe me, I have had my fair share of disappointments -- I've missed vacations, parties, birthday dinners, concerts, weddings, my senior year spring break trip during college and, most recently, a bachelorette party.
I don't recount this for sympathy. I do it to drive home the point that no matter what, I stand by listening to my body and what it needs, no matter the personal cost to me. When I chose to skip out on a bachelorette party back in May, I did it so I could go on a thorough course of IVs and leave a few weeks later -- feeling good -- for a Memorial Day vacation with my boyfriend. People with CF are individuals in every sense of the word. What works for me may not work for another, but life is about choices. Make the choices that you will most benefit from. When it comes to CF, I choose to do things not usually because I want to, but because I have to.
July 2017 -- We were deeply saddened to learn of Amanda’s passing.
Amanda opened her home to us for a photography shoot in 2016, and her
heart to the CF community through our blog. She will be missed by many.
Adult with CF
Amanda has been fighting CF since she was diagnosed at 6 months old. Originally from central New Jersey, Amanda has been living and working in New York City for the past six years. She is a proud graduate of Syracuse University, where she earned degrees in public relations and psychology. After college, Amanda began working at a boutique public relations firm where she capitalized on her love of food and the hospitality industry. Amanda has now parlayed her work-life balance to freelance PR consulting, where she enjoys exercising her creativity with lifestyle and hospitality projects. Follow @gaynorface on Instagram, or contact Amanda directly at email@example.com.
July 2017 -- We were deeply saddened to learn of Amanda's passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
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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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