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.
Although I wasn't sure that I'd still be thriving and working at the age of 44, I was fortunate enough to have people who encouraged me to plan for the future despite my CF diagnosis. That's why I'm pleased to introduce a new resource available from the Cystic Fibrosis Foundation.
Jen Weber, J.D.
January 25, 2018
The Other Side of the Antibiotic Coin
How I Decided on a G-Tube for My Son
I have a “YOLO” tattoo. Not that I need to be reminded that “you only live once,” but when I see it, I am reminded of soaking up the present, of enjoying every moment, right now. YOLO is about living life to the fullest. When you live with cystic fibrosis, you learn a lot about trying to live life to the fullest. You also learn that living with CF means planning.
From a young age, you plan around breathing treatments and pills. As you experience other common issues associated with CF -- adding IV antibiotics, G-tube feedings, and hospitalizations -- planning becomes even more crucial (at least it was for me)! By the time I was in college, planning meant ensuring I had enough oxygen tanks to get to both class and social activities.
Planning helped me feel in control and accomplish my goals -- to go to grad school, pursue a career, travel, and enjoy hobbies that are personally rewarding. When I was in my 20s, I wasn't sure what my future would be like, but am so glad I began putting funds in an IRA and purchased my life insurance through my employer.
What I recognize now that I am older -- 44 years old and seven years post-lung transplants (yep, two!) -- is that planning is a tool I still use. I think we sometimes believe we become pros at managing our CF and don't need to plan. In many ways, that may be true. But much like I turn to CF clinic (and now my transplant team) for plans to support my health when I am doing well, I recognize that planning remains essential in all parts of my life.
That's why I was so pleased to be asked to review "Life and Estate Planning When You or Someone You Love Has Cystic Fibrosis," a new resource from the Cystic Fibrosis Foundation. It helps those living with CF and their loved ones create the right plan and think through important issues -- explaining how to easily assemble the necessary papers, people, and financial resources so you and your loved ones are prepared.
As 2018 is just getting underway, I think it's the perfect time to get organized and check this resource out -- I'm so glad I did. I hope you find the Life Planning publication helpful.
Jen Weber, J.D.
Adult with CF
Jen is an attorney with the Office of Judicial Administration at the Indiana Supreme Court who works in the Personnel and Operations Division. She was diagnosed with CF at the age of 2 and a half, and received double lung transplants at the ages of 36 and 38. Jen is a graduate of Bradley University, and received her J.D. at the Indiana University Maurer School of Law. She began volunteering with the CF Foundation when she was 10 years old as an “Ambassador of Courage” and continues to serve as a board member with the Indiana Chapter of the Foundation. In Jen’s spare time, she enjoys playing the cello, traveling, and doing anything that gets her exercising outside on a sunny day.
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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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