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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
I have found that the limits cystic fibrosis imposes on my life are a bit like weather forecasts -- open to unexpected changes. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.
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Cystic fibrosis has a way of announcing its limitations on you at every major life turn:
What my parents were told when I was born: “Life expectancy (in 1984, the year of my birth) is 14 years old ...”
What my parents were told as I was growing up: “Well, he's going to be capped at 5'6" and 140 lbs., so keep that in mind ...”
What I was told about starting a family: “By the way, you, like most CF males, can't have kids (naturally).” This fun fact was a well-timed disclosure made known to me after I had just began dating. I would bet I am not the only male CFer to be thrown for a bit of a psychological loop upon learning this aspect of the disease.
What I was told about having a career: “Working full time may not be possible …”
These aren't positive things for you or your loved ones to hear at any juncture of life, but as a person with CF these “predictions” also turn out to be a bit like weather forecasts: open to unexpected changes.
As a now 31-year-old with CF, having grown to 6'1" and 200 lbs., with a wonderful wife open to IVF or adoption and a full-time job that helps others while allowing me to work from home, I sometimes wonder where all of those limits went or where they are lurking now.
There are still some nonnegotiable limits CF imposes, such as spending 1-2 hours a day strapped in for
vest therapy (don't forget the nebulizer). And making sure to take 10
enzymes with each meal -- five with snacks -- or the food may as well be tossed out of a moving car for all the good it will do.
Work hours cannot be endless and unpredictable because it would disrupt my reliable
self-care regimen and wear down my immunity defenses. And it's best to not have a career that requires constant
travel, perpetual hand-shaking and rapidly changing environments because it beckons the perfect storm for bad infections and a Contagion-esque health crisis in my life.
But even these CF limits have … well, limits.
Spending 1-2 hours of vesting each day means I have the perfect opportunity to reach out to friends and family via text, Facebook and email, keeping valuable relationships strong and reconnecting with friends. If a social connection is not the priority of the day, organizing the week's calendar, errands and other responsibilities is the perfect vest multitask endeavor. The vest limitation also serves as a helpful reminder that sometimes a mandatory hour of Mario Kart is the best thing for
one's mental health.
Making sure that I take enzymes with each meal acts as a sort of nutritional Pavlov's bell, reminding me that I could hit my 3,000 daily calories via Doritos and McDonald's -- or that I could take an extra 30 minutes to create meals that keep my whole body healthy. (This approach did not set in until my mid-20s when it dawned on me that keeping my weight up means little if my arteries are clogged with grease and cookies.)
Though I cannot jump into 10-15 hour workdays that are often directly correlated with powerful positions and six-figure salaries, I can proactively seek out employers and roles that inherently value work-life balance, offer me a personal challenge, benefit society and afford my family a livable income. I can even plan my own future businesses to fit this mold. This provides me with the gift of valuing experiences and relationships above money.
All of this is to say that although CF sets certain limits, it also leaves glorious, mischievous wiggle room. Whether by hard-fought
scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.
Living with the unknown and beautiful possibilities of life without worry is difficult and delicate for anyone. Although CF affects so much of our bodies, from lungs to pancreas to reproductive processes, it does not control our brains, creativity and work ethic. For that, I am thankful every day.
It's fun to prove CF wrong. Believe me. So when CF announces its next limitation for me, I'll be looking around for the windows and doors the limitation forgets to close.
Adult with CF
Tim was diagnosed with cystic fibrosis as an infant, and credits his parents and CF care team for providing him with years of phenomenal CF care. He completed his MBA in social entrepreneurship and is currently the director of a mobile food shelf program in the southern Twin Cities. Tim lives in Oakdale, Minn., with his wife, Ashlee, and their two dogs, Bou and Sully.
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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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