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.
It's easy to fall into the trap of pitying ourselves and focusing on what is going wrong in our lives. Instead, spend your time looking for all the good things that are happening too.
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When my son, Evan, was diagnosed with cystic fibrosis more than six years ago, we were immediately immersed with love, support, and understanding from our friends, family, and neighbors. Somewhere among the pile of cards and well wishes, we were given
Emily Perl Kingsley's poem titled, “Welcome to Holland,” in which she compares raising a child with an illness to planning a fabulous trip to the fast-paced, exciting country of Italy, only to discover mid-flight that you are actually destined for
“The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a
while and you catch your breath, you look around ... and you begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.”
I've never forgotten this poem and have often paused and reflected on the words, “Find the windmills,” along this unexpected yet beautiful journey of raising my son, especially as of late.
It took a world pandemic, but -- for a moment -- it felt nice to have the whole of the world living in our reality, worrying our worries and talking our talk.
But, I can't help but feel as I did all those years ago. How quickly the world moved on and, once again, I find myself in Holland asking, “Where are the windmills?”
We live in a beautiful place.
Although we may not have been born avid outdoorsmen, we are quickly headed in that direction. Our once jammed-packed-with-sports evenings and weekends have been replaced with Camelbaks® and quality time exploring the beautiful Wasatch Mountains
we call home. We've picked up kayaking, ventured out horseback riding, taken the unbeaten path on four-wheelers, and have even tried our hand at fishing. We have yet to catch a fish, but we have a renewed appreciation for nature, our bodies, and the
peace that exists between the two.
There's no place like home.
When you've nowhere to go and no one to see, it brings it all back home in a hurry. Don't get me wrong -- there are some days I'd give just about anything to go wander Target, but I'm grateful for the slower paced days we now call our norm. Summer evenings
spent together in the backyard. Dad trying his hand at the latest Traeger Grills®recipe that may or may not be done at the right time. Mom working
away in the already meticulous flower bed, picking at anything that even resembles a weed. And two brothers, caught in an exciting game of PIG that will inevitably end in an argument.
But, somewhere in-between the flexible dinner time, endless weed pulling, and brotherly rivalry is the stuff memories are made of.
Connecting through technology.
My once color-coded paper planner has quickly been replaced with Zoom links and Google hangouts. Although I've got a long way to go until I resemble a person even close to tech-savvy, I'm grateful for the technology that keeps my family connected to the
outside world. CF Foundation updates, telehealth appointments, the Marco Polo stay-in-touch app, social media -- all tools that have allowed us to stay informed and connected to our friends and support system.
Give us all the hope.
More than ever, we find ourselves relying on hope. Hope for peace during this unsettling time where lines are being drawn and people are being forced to pick a side. Hope that the oh-so-important, life-saving work in the world of CF continues. Hope that
Trikafta® is coming soon to my son's age group. Hope for a vaccine so that we can once again feel the warm embrace of those we love most, enjoy a nice dinner
out -- but mostly -- not have to homeschool anymore. Hope that someday this ends and that years from now, my kids won't remember this time as, “the time mom almost lost it,” but rather as the crazy time we spent together at home and went on lots of
“If you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”
We are in this together, friends. I hope that you too can find your windmills among your storms.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Stacy Allen has two sons, Jaxson and Evan. Evan was diagnosed with cystic fibrosis in 2013. Stacy is a member of the Utah/Idaho chapter board, the parent advisory board for Intermountain Primary Children’s Hospital CF Center -- a Cystic Fibrosis Learning
Network family partner -- and a member of the CF Foundation’s Liver Disease Guidelines Committee. Stacy lives with her husband and two boys in Herriman, Utah. Follow Stacy on Facebook or Instagram @stacyallen87 or Evan’s Entourage on Facebook or @evans_entourage.
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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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