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.
As a child, my parents instilled in me the belief that I should not let cystic fibrosis overwhelm my life. Since then, I haven't let CF interfere with my goals -- earning graduate degrees online and performing a virtual internship.
November 6, 2020
Planning for a Future I Never Thought I’d Have With CF
My Son's Feeding Therapy Journey
Every good story has a protagonist and antagonist as the main characters, and important secondary characters that help influence the main characters. In the story of my life, I work hard to make sure cystic fibrosis stays in its role as a secondary character.
As a child, when I would start to feel overwhelmed by CF and what it required of me, my parents would repeat a simple mantra: You have CF; CF does not have you.
It was a way to remind me that CF is only a part of me, not the entirety of me. I am more than my CF diagnosis. I am a voracious reader and writer. I have blonde hair and eyes that can look blue or green depending on what color shirt I'm wearing. All these things help make me who I am, but none of them make up the whole of me.
This mantra helped shape how my parents raised me as a child. Although I was expected to have complete compliance with all my CF medications and treatments, I was allowed to occasionally skip a vest treatment. My parents recognized that, sometimes, I just had to be a kid, not a kid with a chronic illness.
As I grew into my teenage years, I was given more control over managing my CF. I was the one who would call in to the pharmacy for refills on my medications. My parents and doctors had the final say in medical decisions, but my opinion mattered and was taken into account. I felt like I had greater control over my life, which made me feel more empowered when it came to taking care of myself.
I was still expected to be compliant with all my treatments, but I had the freedom to be a normal teenager, too. The night of my senior prom, doing my vest wasn't even a thought in my head. I brought my pills with me, danced for hours, and ended the night watching the “Lord of the Rings” movies with my best friend. I was just like any other (kind of nerdy) teenager.
Now, as an adult, I have a realistic view of my life and how CF fits into it. I decide what I want to do, what I want to achieve, who I want to be ... and then I figure out how to make it work with my CF.
When I decided I wanted to earn a graduate degree, I looked at online programs because I knew in-person school was going to be difficult. I ended up earning two master's degrees. When looking for an editorial internship at a publishing house, I wanted a virtual one so I could gain experience and also demonstrate that I was completely capable of doing my work from a virtual setting, knowing that in the future I will likely have to do at least some work from home or the hospital.
Everything depends on working together with my care team by having open and honest communication with them. I know I can go to them with anything, and they will help me with whatever I need. I trust them completely and know they will find ways to help and encourage me. The doctors know CF better than I do, and I know me better than they do. By working together, I know we are forging the best path for me and my health.
When COVID-19 was at its peak in Colorado, having CF put a limit on what I could safely do, and I wasn't used to that. Now that COVID is at least a little more under control right now, I have a little more flexibility. I discovered that, while I have new restrictions on my life, I could still work within those restrictions to achieve what I want to do. I have more time to devote on work for my publishing internship and on my personal writing. I have time to concentrate on my health goals, like getting back into hiking shape and working toward hiking my first fourteener (a mountain peak with an elevation of at least 14,000 feet) next year. Rather than viewing this time for what COVID is preventing me from doing, I am choosing to look at the opportunities this strange time is giving me.
In the end, every decision I make comes down not to what CF will allow me to do, but rather what I allow myself to do.
Everyone in the CF community is so much more than a CF diagnosis. We have CF; CF does not have us. We are the protagonists of our stories, so write your life the way you want it to be.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Brittany was diagnosed with CF at 10 weeks old. She has earned a degree in English Literature and Language, as well as two graduate degrees in business. She loves going to the mountains whenever possible, especially to visit her favorite backcountry camping
site on Leigh Lake in Teton National Park. She spends her days reading, writing, and training her cocker spaniel, Sawyer, to be a therapy dog. Her family started the Great Strides walk in her hometown, and she has participated in several clinical
trials. She lives in Colorado, and you can find her on Twitter, on Instagram, or through her email firstname.lastname@example.org.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails