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.
Cystic fibrosis, life expectancy, and my struggle with the “seize the day”-paradigm.
July 30, 2019
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The story of my relationship to my life expectancy probably sounds familiar to other cystic fibrosis patients. When I was born in 1988 and diagnosed with CF after an emergency surgery for meconium ileus, doctors told my parents that I would most likely
not live past 18 years old. However, despite some difficulty with gaining weight that was resolved with the help of a devoted nanny, lovingly called “Tadi,” who spent hours feeding me, I soon started to thrive.
When I was 7 or 8, I stumbled upon a magazine from our local CF organization. I didn't fully understand, but I garnered enough from the article I had read to understand that someone's child had died of CF, at an age even younger than mine. I ran
to my mother, crying in a panic, and asked if I could die from CF. She answered that nobody could predict when someone would die. These words, together with the assurance that I was doing really well “for someone with CF,” helped me push recurring
fears to the contrary aside. Years of therapy later, I can reclassify seemingly unrelated childhood night-terrors and “irrational” fears of thunderstorms, fire, lights, sirens, appendicitis -- and later -- cancer (as I have written in another blog post),
as the continual reemergence of fear I had denied: Having CF meant I would die young.
But I didn't know when “young” was.
When I was around twelve, my parents started taking me to a naturopath in another city. My naturopath, Manuela, also had CF and wrote two autobiographies about her illness and lung transplant experience. My parents bought the books and I secretly read them and -- as my parents, who tried hiding the books from me, had correctly predicted -- they utterly terrified me. Reading of the abrupt decline of Manuela's health in her early 20s convinced
me that I, too, would suffer a similar decline around that age. The doctors who had told my parents I would die before age 18 had been right. When I reached my 18th birthday and nothing happened, I moved that imaginary threshold of life expectancy
to 20, then to 25, and later to 30, haunted by the knowledge that I wouldn't live as long as my peers. To the inevitable “but you could be hit by a bus tomorrow” that people without CF usually provide at this point in my narrative, I answer: “Imagine
you're walking blindfolded in the middle of the road and can hear the bus approaching -- you know it'll hit you, you just don't know when.”
Now at age 30, I have learned to relax, at least a little. I continue to see a therapist, though less frequently, and I try to concentrate on maintaining my good health (mentally and physically) and enjoy life with my wonderful partner, my adorable goddaughter,
and work at my dream job as a junior researcher in disability studies.
Amid my attempts to enjoy the great and small joys in life, I'm faced with another problem. While studying some of society's expectations about people living with chronic or terminal illness, I have come to understand what I had instinctively known long
People think that, because of my reduced life expectancy, I somehow know more about the meaning of life than “normal people” and they believe that I live every day as if it were my last. Both expectations create a pressure that I have come to feel intensely.
If I should expect to die young, how should I live my life? How do I integrate the need to make the most of my short or shorter lifespan with the necessity to attend to the quotidian, the ordinary? As a fairly stable adult CFer, it seems I live with an
endlessly deferred terminal illness. While CF is likely to kill me, I'm not yet in end-stage lung disease -- like Schrodinger's patient, I'm both terminally ill and yet not so. And I have no chance of getting out of this limbo, because -- of course,
and thankfully so -- nobody can tell me when my current stability might come crashing down. It feels like drinking from a bottle of milk that has been in the fridge for a while -- without knowing the expiration date, you're always half-expecting a
Contrary to popular opinion, my reduced life expectancy does not mean that I live a better life than others. Rather, society's implicit pressure of making my short life meaningful has contributed to my recurrent unstable mental health. Because, let's
face it: I don't live every day as if it was my last. Perhaps not even every other day. Because I have a job. Because I need to cook, buy groceries, shower, file my tax reports, fold laundry, or correct mediocre term papers. Because some days, I'm
so exhausted that I can barely bring myself to do my nebs before collapsing into bed. Because some days, I'm overwhelmed with fear and insecurity. Sometimes I'm struggling
with grief over unattainable dreams and life goals that I have had to give up on. Sometimes I'm terrified that I'm running out of time and sometimes, when I look back on the many ordinary days that make up our lives, I become afraid I haven't tried
hard enough to seize every day despite the fact that I'm living a good life, full of wonderful people for which I'm eternally grateful.
Living with cystic fibrosis means, at least for me, that I have to actively refute the idea that I could live every day as if it was my last. I'm not a terminal cancer patient with two months to live. I can't just quit my job and fly to Paris. I have
to find a way to live with cystic fibrosis and the insecurities of my illness. So, I'm not always living my best life. And maybe, believing that I will have enough days left to make up for the ordinary, boring ones is the better mindset anyway.
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Adult with CF
Born in Germany, Dorothee was diagnosed with cystic fibrosis at birth. She has always tried not to let her CF stop her from enjoying life. She loves traveling and learning new languages. After graduating high school, she completed a volunteer service in a parish in Stockholm. She lives near the Baltic Sea where she works as a junior lecturer in American literature at Kiel University. She is pursuing her PhD with a dissertation on representations of time and disability in contemporary American literature.
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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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