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.
Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.
September 28, 2015
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You know, I really used to resent having to call you that. Mommy. I know that you wanted me to stay little forever, but c'mon -- more than half of people with cystic fibrosis pass away before their eighteenth birthday. Growing up was the only thing I cared about.
If I'm being honest, I used to resent a lot of the things you did to (to? for?) me. Forcing me to
vest at slumber parties, never leaving my side at the hospital, asking me over and over (and over) if I had
taken my pills, and if not, then when would I, and with what beverage, and did I need a straw, and here's a granola bar and some hand sanitizer and would I please go call Grandma?
Whether you didn't trust me to take care of myself or just wanted me to remember that I was sick, I didn't know. However, my first suspicion seemed more probable, because you wouldn't put up with any talk of a port placement surgery, an oxygen cannula or the Make-A-Wish Foundation. "That's not for you, Hannah. You're fine." I grew accustomed to your tame, tight-lipped clinic tantrums and stopped asking the doctor questions you didn't want to hear the answers to.
The “T” word was first spoken during a hospital stay in my fifteenth year of life. You were downstairs getting coffee when the doctor looked me in the eye and told me that I'd need
new lungs someday (not soon, but sooner than anybody would want someone else's organ sewn into their chest). I nodded my head in understanding and silently thanked the universe for your morning caffeine addiction.
Cystic fibrosis always scared you more than it did me. You trembled at the thought of brittle bones and damaged lungs, and you trembled at the thought of
CF-oriented anxiety or depression. That's why when I received the clinic's yearly screening survey, I always circled “No” instead of “Yes.”
No, I do not feel anxious, nervous or on-edge most days.
No, I do not frequently fear that something awful is about to happen.
No, I do not think I need help.
Yes, yes, yes.
When I moved to the other side of the state for college, I was instantly introduced to the health-related liberties I had been craving since adolescence. I skipped my
breathing treatments when my friends were over, I slept alone at the hospital and I took my pills when I felt like it. Needless to say, my body declined...but it was worth it, right? Because I had got what I wanted and now I was happy, right?
I realized that along with my freedom to neglect medical compliancy came another: the freedom to have realistic, occasionally terrifying conversations with my doctors without feeling guilty about it.
That's why when second semester rolled around, I walked into the ER and requested additional oxygen, a bed on the sixth floor and a port placement surgery. It was my body and I knew what it needed. I always had. The next day, I broke down to the social worker, told her about the crippling
anxiety I had been hiding since puberty and asked for the help you never knew I needed. I finally circled “Yes.”
Resentment is a feeling I no longer harbor, especially when it comes to you. With age, I realize that you didn't just want me to stay little forever, but you wanted me to stay alive forever -- to remain in your arms, under your roof and on your Earth. And how could I ever blame you for that?
I love you, Mommy.
Adult with CF
Hannah is a student with cystic fibrosis at the University of Michigan, where she majors in creative writing and minors in digital studies. When she isn't writing, she likes to walk dogs -- her dog, someone else's dog, it doesn't matter -- and cook vegan food. To see more from her, check out her blog, YouTube channel, and Facebook page, or follow @AHealthyHan on Instagram and Twitter.
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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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