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.
Looking back at my freshman year, I realize that putting college before my CF wasn't the first thing I had all wrong.
August 12, 2015
My Decision to Stop Working
Coffee and Ringtones
As I sat down at my new desk and tidied my wobbling stack of pencils, I thought I had it all figured out. My parents had just driven away with tears in their eyes, but I was doing just fine: dresses in the closet, rug on the floor, and purple power PICC in my right arm.
I was finally a student at the University of Michigan and it was time for my life to begin.
I mean, sure, I had just been discharged from the hospital two days earlier despite advice from my doctor to stay, but I had friends to make and dreams to chase.
Looking back, I realize that putting college before my cystic fibrosis wasn't the first thing I had all wrong. Why did I bring so many dresses to school -- did I really think I'd be wearing anything other than black leggings and sweatshirts? Why (as I was fully aware of my “adorable” tendency to spill apple juice and pasta sauce) was my rug white? And for the love of all things beautiful, why did I bring so many pencils to school? Note taking? That's what a laptop is for, not that mine was ever charged.
Chronic illness aside, college is an amusement park of mistakes. The great thing about it, though, is that everyone around you is riding the same rides.
Hearing about my freshman year experiences with CF won't keep you from messing up, and that's the way it should be -- “oops” is the best teacher. But in situations where being a full-time student could put the state of your oxygenation at risk, here are a few tips from someone who's been there.
Adult with CF
Hannah is a student with cystic fibrosis at the University of Michigan, where she majors in creative writing and minors in digital studies. When she isn't writing, she likes to walk dogs -- her dog, someone else's dog, it doesn't matter -- and cook vegan food. To see more from her, check out her blog, YouTube channel, and Facebook page, or follow @AHealthyHan on Instagram and Twitter.
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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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