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.
In 2017, our most-read blog posts covered a variety of topics including parenthood, guilt, and loss. Check out the countdown below to see if your favorite post made the top 10 list!
January 3, 2018
How I Transitioned Off of My Parents’ Health Insurance Without the World Ending
Arjun’s Planet-Sized Spirit
10. Fulfilling My Sister’s Un-Bucket List
By Kristen Brockman
When my sister passed away last year from cystic fibrosis, my family discovered that the computer with her list of requested arrangements had been wiped out. Little did I know, the damage control we did in the wake of this would take me on a very special
journey. Read the full post.
9. Striving for the Impossible: Caring for My Wife With CF
By Ray Poole
How much are you willing to do for a loved one? The answer is simple: anything and everything, right? We advocate for them, make sacrifices to be with them and worry about them constantly. Last year I did all of this, but -- somehow -- still felt pangs
of guilt. Read the full post.
8. Setting the Record Straight About Coughing Up Blood
By David Orenstein, M.D., M.A.
Many people with cystic fibrosis experience hemoptysis. Although that can be serious and is often frightening, most often it’s not as serious as you might think. Let me set the record straight. Read the full post.
7. Why Being a Mom of 2 Kids With CF Sometimes Means Watching Your Attitude
By Kimberly Houston, MSN, BSN, CPNP-PC
As the mother of two girls with cystic fibrosis, the time-consuming routine can wear down on you and cause frustration. Although CF can be challenging, it’s important that I keep my attitude toward the disease in check because I know it will ultimately
shape how my kids approach their lives with CF. Read the full post.
6. Looking for Answers When I Don’t Know the Questions
By Jesse DaCosta
Shortly after my fiancée, Ashley, told me about her cystic fibrosis, we were engaged. Months later, she passed away, leaving me to figure out what I could have done differently and how to cope. Read the full post.
5. Understanding the Differences in Survival Between Canadians and Americans With CF
By Christopher Goss, M.D., M.Sc.
& Anne Stephenson, M.D., Ph.D.
An analysis of CF patient registry data from the United States and Canada found that Canadians were living about 10 years longer than Americans. Two of the study authors discuss the findings and offer some possible reasons for the results. Read the full post.
4. Dealing With Awkward CF Situations
By Mara Cray
Although having cystic fibrosis can lead to awkward situations, dealing with it with humor and grace has helped me put them in perspective. Read the full post.
3. Deciding to Have a Second Child When Your First Child Has CF
By Rachael Havey
My husband and I had always said that we would either have no kids, or we would have two. But, when our first child was diagnosed with cystic fibrosis, we were suddenly faced with a difficult decision. Read the full post.
2. I Have New Lungs and I Still Have CF
By Rima Manomaitis
I had a lung transplant earlier this year and, although I’m able to do more physically than I could before my transplant, I still have cystic fibrosis. I still need support -- support from the CF community, from the CF Foundation, and from you. Read the full post.
1. Updates From a School Nurse With Three Students With CF in One School
By Rachel Jackson, RN
About a year and a half ago, I started preparing for three students with cystic fibrosis at the school where I work as a school nurse. Here’s an update on how things have been going. Read the full post.
Senior Web Content Coordinator, Cystic Fibrosis Foundation
Bethlehem is a senior web content coordinator at the Cystic Fibrosis Foundation. In her role, Bethlehem manages the editorial calendar, contributor relationships, and production process for the CF Community Blog. She also works to implement the editorial calendar for other areas of the site, and maintains a consistent look and feel throughout cff.org. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family. Her guilty pleasures? Watching YouTube vlogs and eating tons of chocolate.
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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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