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.
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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.
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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.
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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.
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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.
Pulmonary function tests (PFTs) are a standard component of quarterly cystic fibrosis clinic visits, but they can often cause a great deal of stress for people with CF. Here are a few strategies that I've found helpful for reducing my own PFT anxiety.
January 19, 2018
The Journey to My First Lung-iversary
Looking Back on My Make-a-Wish
I have been known to work myself into an emotional lather about my health, particularly when it comes to doctor's appointments. This is especially true when it comes to pulmonary function tests (PFTs). My mind races along with my pulse as I wonder what the day's numbers will bring. I think to myself, “How do I feel today? Better than my last appointment? Or the same? The same would be fine. Did I get enough sleep last night? If the number is bad, what's the worst that will happen? Inhaled antibiotics? IVs? Would they admit me ... today?”
And on, and on, and on.
A few months ago, I found myself nodding enthusiastically as I read Somer Love's blog post about PFT anxiety. No matter how stable my health has been, PFTs still haunt me.
Before my most recent clinic appointment, however, I decided to prepare a bit differently. And while I can't say I was 100 percent worry-free, I did find that these four strategies helped reduce my PFT anxiety:
If I'm close to baseline, my husband typically just records the numbers and we move along with our day. But, we also know that my CF care team wants to know if my FEV1 dips below a certain level, so my husband will tell me if my number is low enough to warrant a call to the doctor. Occasionally, he will share an unusually high number with me so that we can celebrate together.
We usually try to do a home PFT a few days before I go into clinic, which helps alleviate some of the stress I feel at the appointment. If the number is fine, that's great; if it's low, we know that I'll soon have an opportunity to meet with my doctor and figure out a plan to move forward.
I know I may not be able to employ each of these strategies before every future appointment, and I'm sure that managing my PFT anxiety will continue to be a moving target. But, I'm encouraged to know that with a little extra preparation, there is hope for loosening PFT anxiety's grasp -- one deep breath at a time.
Adult with CF
Megan was diagnosed with cystic fibrosis at 4 months of age, and has been a CF patient across three different states and multiple CF care centers over the last 33 years. After graduating with a BA and MA from Stanford University, she received a Master of Public Policy degree with a certificate in health policy from Duke University. When Megan isn’t working on health policy, she enjoys dance and yoga, which have been crucial parts of her CF care routine since childhood. A California native, Megan now lives in Silver Spring, Md., with her wonderful husband, Bobby.
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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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