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.
Some days, the biggest struggle I have is
accepting that I have CF.
March 8, 2016
3 Important Lessons Learned on the Road to Becoming a Dietitian
Changing How the Foundation Partners With People With CF
Having been diagnosed at
birth, I've lived with cystic fibrosis all my life. Still, the older I get,
the more I struggle with accepting the disease. You would think that, at
almost 30 years old, I would have gotten used to it. It should be normal,
perhaps even easy. It's not. I take my medications, I do my
nebulizers, I go to my care
center appointments and I know when to take a break. In terms of managing my
treatment plan, I'm a model patient. I know how to deal with the
demands of my body -- yet I don't know how to deal with the emotional
I was first diagnosed with depression
in 2011. Six months of antidepressants helped me to feel better. In 2012, the
depression came back, an anxiety
disorder in tow, and the two of them knocked me flat on my back.
into a hypochondriac. My ribs hurt? Embolism! My head hurt? Brain tumor! It got
so bad that I couldn't be alone. Three months of in-hospital therapy helped me
understand that I was not afraid of getting cancer. In reality, I was so afraid
of CF that I couldn't face being afraid of the disease itself.
My boyfriend Benjamin always visits me in the hospital.
Today, I can admit that I'm afraid of
what CF has in store for me. The last two years have been incredibly
difficult. Physically, my CF had always been manageable. But that changed.
I cultured positive for B. cepacia (Burkholderia
cepacia). I got pneumonia, was hospitalized for DIOS (distal
intestinal obstructive syndrome), my PFTs dropped and I was diagnosed with
pre-diabetes. Each new diagnosis sent me into a black hole of despair for days
I have begun to express my anger, sadness, fear and grief
about what is happening. Yet, some people only see CF as a physical disease.
CF is a disease that takes an emotional toll. I want to tell them that I'm
not just a disease that is being treated. I'm a flawed, emotional human
being who struggles with her disease.
My therapist tells me to
accept that I have CF and not fight reality. But, acceptance feels
like giving up. I don't want to spend so much time down in that dark
hole, but how can it be okay that the CF is trying to take over my
life? How can I stop worrying that the next infection will be
"it" -- that one illness I don't recover from? I want so much in
life, and CF keeps taking my time away. How can I accept that? I
hope I can answer that question someday. Today, I cannot.
Standing at the top of Arthur's Seat in Edinburgh, having fought my way up the hill. (I guess it's always an uphill journey with CF.)
I've always received all the support
possible from my family and friends, and couldn't feel more loved. CF has an
emotional side and I need their help to face my fears and sadness. Even
though they are more than 300 miles from my home in Kiel, Germany, my
parents are always there for me. My boyfriend, a paramedic, takes care of
me when I'm sick, calms me down and changes my IV catheter when I'm on
Admitting my struggles with depression and anxiety to my friends has usually
deepened our friendships. Whenever I've talked openly about my struggles with
my disease, I've received support, empathy and, sometimes, admissions that
they too have mental health issues. They have helped me through so many
struggles and I'm sure that with their continued support, I will learn to
accept my CF more easily.
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.
Share this Post
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.
Follow Us On
With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails