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.
After leaving a job where all of my colleagues knew that I have CF, I've chosen to stay guarded in my new work environment and not take the risk of telling anyone about CF, including my superiors.
December 8, 2015
NIH Research Forms Basis for Advances in CF Treatment
On Sadness and CF
I remember a day this past summer when I drove into work a half hour late. I was late because I let myself sleep in a little after coughing, and feeling sick, all night. I sat down at my desk like it was any other day; no one acknowledged that I walked in late, and no one said anything when I started coughing excessively just minutes after arriving. That's because I worked with a staff of 10, and each of them knew about my cystic fibrosis.
I told my supervisor early on that I have CF. I knew I would have to miss work for doctors' appointments or being sick, and I felt like I owed her an explanation. About a year later, when the rest of my colleagues found out, their initial reactions seemed negative: fearful, pitying, over-protective in a way that they would try to take tasks off my plate. Eventually the unfamiliarity of CF subsided, and my colleagues became like family. We all grew comfortable with CF being a part of my day at work.
After three years of working there, the time came for me to move on and grow in my career. So when I got a new job offer, I was excited for this next chapter.
I have chosen to not share my CF with my new colleagues, mainly because I don't know them very well yet.
Disclosing information about my health is like sharing a personal piece of myself, and I feel that trust needs to be built before sharing.
I have met people in the past who were judgmental when I disclosed my CF, and in those cases I wrote them off. But when you're at work and someone is less than supportive about your CF, it can be difficult to ignore. You may have to see that colleague every day and collaborate with them on assignments. There are people who will try to get ahead in the corporate world by manipulating anything they can to use against you, and I worry that I may not be lucky enough to get the acceptance and support that I got at my last job.
I've chosen to stay guarded in my new environment and not take the risk of telling anyone about CF, including my superiors.
When coughing fits happen at work, people take notice. They say things like, “Do you need a cough drop?” and “You've had that cold for a while now.” or “Do you have the plague?” (Yes, someone actually said that to me). To answer these reoccurring questions about my health, I reply by stating that I have asthma or allergies.
Looking back at how I handled CF at my old job, I have no regrets. But I did learn some lessons. I'll admit, it doesn't get much better than walking into work each day and knowing that you are spending the day with your friends. But I can reflect on some things that I could have done differently when it came to disclosing CF at work:
So, to tell or not to tell? My choice is not to tell right now, but my suggestion is that you should do what makes you comfortable. Use your judgment to decide if you feel comfortable enough with your colleagues to talk about CF, but don't ever disclose something just because you feel obligated or pressured. You owe no one an explanation. Every one of your co-workers has struggles and challenges in their lives. You may never find out what their struggles are, and it's up to you if you want them to know yours.
Adult with CF
Katie was diagnosed with cystic fibrosis at the age of 22. In 2014, she participated in the CF Foundation's Metro D.C.'s Finest Young Professionals Campaign and received an award for raising the most funds. She was also the keynote speaker at the Finest Finale event and speaks about CF at local fundraisers. In addition to fundraising, she enjoys running, line dancing, drinking coffee and spending time with friends.
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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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