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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
When it comes to my cystic fibrosis care team, I've learned that it's often the little moments that matter most.
June 23, 2017
Ask a Case Manager: Health Insurance, Living Expenses, and Clinical Trials
How Yoga Helped Me Manage My CF
By definition, a champion is someone who dedicates themselves to promoting a cause or idea. I serve as a Partnerships for Sustaining Daily Care (PSDC) champion with the Cystic Fibrosis Foundation, and we are on a mission to help strengthen the partnerships between people with cystic fibrosis, their families, and their care teams.
As a 37-year-old with CF, I've spent an awful lot of time with my own CF care team, making many observations and taking mental notes along the way. And if there's one thing I've learned, it's that the little moments often have the greatest impact.
Case in point: A few years ago, I was in the hospital and had been having a hard time getting back to my baseline. My respiratory decline had been so gradual, I hadn't even realized how shallow and strenuous my breathing had become. One afternoon, my amazing nurse practitioner came into my hospital room to see how I was doing. When I expressed my frustration, she put her hand on my shoulder and said, “A few times a day -- whenever you think of it -- stop and take five really deep breaths.”
It was something so simple and obvious; it didn't cost one penny, and yet it made such a remarkable difference. I look back on that moment with abundant gratitude, as one simple moment that's helped me countless times. I still use that advice to this day.
After gathering stories from other adults with CF, their families, and care teams through the PSDC initiative, here are a few more examples of small moments that had a big impact when it comes to CF care:
“My 2-year-old son with CF really struggles to gain weight, which has been extremely overwhelming due to the positive correlation between weight and lung function. Walking into our most recent clinic appointment, our doctor made my day when he pointed to my son's stroller and said, 'You push him around in this thing now, and he'll be around to push you in your wheelchair.' It made me smile in a moment where all I wanted to do was cry. -- Mother of a child with CF
“I had a young adolescent man as a patient who had a lot of digestive troubles. His mother was very bothered by his gas (which was exacerbated by him not taking enzymes with snacks), but he thought it was hilarious and was not a concern to him at all. We weren't getting anywhere trying to push him toward my or his mom's goals of taking his enzymes, but we knew that he was concerned with gaining more muscle as a lot of young teenagers are. So, I simply explained how taking enzymes can help him significantly improve his protein absorption when he eats his snacks, which, in turn, helps him build muscle. This came to be something that he really valued and changed his mind about how he takes enzymes with his snacks. Sometimes, what we think is important isn't important to the person.” -- CF dietitian
"My son with CF and I were in for a quarterly appointment after a culture came up positive for an infection, despite the fact that there was no sign of illness. After completing an aggressive course of antibiotics, all I could think about as we sat waiting for the new culture results was a possible hospital admission and how we were going to rearrange our lives for it, what our new 'normal' might be if the infection takes hold, if this was the start of his decline, and everything I knew my son was so afraid to miss out on. When the results came back with good news, my son began to express his relief, to which our doctor replied, 'Me too.' To us, those words conveyed the feeling that we were partners who ultimately want the same thing -- good news and good health." -- Mother of a teenager with CF
If there is one common thread connecting these moments, it's basic human-to-human connection. Despite the challenges we all face, when health care professionals and their patients can pause long enough to really connect, a single moment can hold more power than you think.
At the end of the day, human beings are driven by emotion, and health care is no different. What we feel often outlasts what we think, so it's the little things that make a big difference.
If you have a little moment or story you'd like to share about sustaining daily CF care, email the PSDC team at PSDCteam@cff.org to be part of this movement.
Adult with CF
Melanie is a patient advocate, a champion with the Cystic Fibrosis Foundation, and a member of CF advisory boards. Having studied nursing and psychology at Northeastern University, Melanie has always been passionate about people and helping to ignite positive change. Melanie lives in beautiful Massachusetts with her husband, Mark, and son, Myles. She loves hiking, writing, being by the ocean, and spending time with her tribe. But mostly, she’s busy just trying to be a good human and raise a good human.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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