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.
Because so much rides on them, the pulmonary function tests (PFT) -- that are a part of every cystic fibrosis care center visit -- fill me with anxiety.
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Can we talk about PFT anxiety?!
A doctor may not diagnose you with it, but -- like other kinds of anxiety -- I really believe it is a real thing, and I have had this anxiety for as long as I can remember. “What did you blow?” “What were your numbers?” “What are you breathing at?” So
I swear there is more of an art than there is science to these pulmonary function tests. In fact, I believe
the results might even come down to what color shirt I had on that particular day. Ha ha.
Ok, not really. But, for reals, there is so much that rides on this grueling test. Growing up, I never was a good test taker, and I am reminded of that every time I do a PFT. Perhaps my whole test-taking stress and anxiety stems from the pressure of a
PFT. Ha ha. I really wouldn't doubt it.
As I sit down, or stand up -- whatever way I prefer -- the respiratory therapist (RT) is calibrating the machine and entering my height and weight, because all of that data can change my
numbers -- either which way -- in just the slightest bit.
The machine is finally calibrated. The RT hands me my nose clips, but before I take them I have to wipe my sweaty palms off.
OK, nose is plugged. It's go time. I take a couple of normal breaths. “BIG breath in, and BLAST it! BLOW, BLOW, BLOW, BLOW, BLOW, BLOW, BLOW, BLOW!” I see the words "GOOD EFFORT" pop up on the screen and I hear, “Deep breath in! You're done!”
Now, it's the moment I have been dreading. Will there be a two-week hospital stay in my future? Do I really feel good? What will the numbers be? Will I still be at baseline?
The numbers pop up. Ugh; down from my last appointment. But, it was just my first blow. I still have two more tries, at least. I can still bring the numbers up. I shrug it off and nervously laugh at the RT and say, "Well, that was just my practice blow."
˙And then I repeat the process, again.
Seeing the numbers and facing the reality of what percentage of lung power I have left can be somewhat discouraging, especially since I prepare every minute of every day for these tests. I really try so hard not to focus on the numbers, but so much rides
on the results that it makes it difficult not to, especially since my baseline is below 30 percent. At this point, every percentage counts.
Clinic days can be exhausting if my PFTs aren't up to par. There are talks of adding new meds, being admitted, or changing things up when I know I am already
doing everything I possibly can. I can go from feeling happy to sad, stressed, anxious, frustrated, disappointed, and even angry -- you name it -- basically every emotion is felt on clinic days if I don't "pass the test."
It's important for me to celebrate the wins. When PFT numbers are good -- or even when they are stable -- it seems to make the whole clinic process so much easier and go a lot smoother. We all know how great it feels to be able to walk out of clinic feeling
like you're on cloud nine.
It's also very important for me to keep a positive mindset. I believe this is just as important as my daily medical regimen.
The mind can be a very powerful tool. I am continually amazed at all that my body endures and how hard it fights.
So, I may not pass a grueling PFT test here or there, or even conquer my lifetime PFT anxiety. However, I will continue to keep kicking CF's butt, while trying to stay positive. I'm not saying it's going to be easy, but it will absolutely be worth it.
Breathe out Love! Xo❤️
Adult with CF
Somer was diagnosed with cystic fibrosis at 11 months in 1980. She tries to live each day to the fullest by keeping her hopes high and dreams big. Somer is an active advocate in the CF community who has spent her life fighting the disease alongside her parents. Follow Somer on Love To Breathe.
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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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