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.
Although some people are very open about their cystic fibrosis, I prefer to keep my diagnosis to a small group of family and friends -- and that is OK. There is more than one correct way to live with CF.
August 7, 2020
Mental Health During COVID-19
Answering Questions on School Reopening and CF
“What are those?” a friend asked me, pointing to my nebulizer kits resting on my medicine cart. A few friends and I had just finished watching “13 Going on 30” and
were hanging out in my college dorm room. I took a deep breath, considering my options. Should I say they just help my lungs and leave it at that? Or should I explain the full breadth
of my disease, cystic fibrosis?
“They're for my nebulizer, which I use because I have cystic fibrosis,” I replied. I described my respiratory therapy equipment and living with CF. I feared that they would reject me as a friend if I revealed this aspect of my life. Despite this hesitation,
I decided to share my disease with them and found that they were extremely supportive of me, asking questions and listening intently.
This happened three weeks into my freshman year at college. At the time, I thought this move was risky, considering I did not yet have any close friends, and these girls had no obligation to stick by me.
However, I chose to disclose my life with CF to them because I felt it was necessary to do so if I wanted to deepen our friendships. I wanted to cultivate trust and honesty.
Although I am not super open about having CF (at the time only my family members and close friends from high school knew about it), I appreciate when others ask me about it, as I enjoy spreading awareness and telling my story. Opening up to my college
friends was a major step for me.
Sharing my story with my friends allowed me to grow in confidence. My roommates were always considerate of my health, as they were hyperaware of germs and allergens in our dorm room and
consulted with me about anything that might jeopardize my health. Admitting to living with cystic fibrosis to my friends encouraged me to prioritize my health by performing my airway clearance treatments with due diligence, informing my care team when I felt unwell, and attempting to get enough sleep each night (though I did pull a few all-nighters).
I wanted to stay healthy so that I could continue to build these friendships, keep up with my studies (procrastination happened, of course), and participate in events on-campus -- like intramural basketball and Halloween costume contests. I was lucky
that I never had any major sicknesses -- even though a dorm is a breeding ground for germs -- so CF didn't have to define all my relationships in college.
Through this experience, I came to understand that there is no right or wrong way to live with CF. Of course, health should be one of the primary focuses, but faith, loved ones, work, study, passions, and hobbies should simultaneously be given consideration.
I recognize that some are comfortable being public about their disease -- others share only with certain individuals -- and that is OK. It just depends on the person.
Personally, I was, and still am, selective with whom I want to divulge this information, partly because I am generally shy and introverted and partly because I don't want everyone around me to know my business. I rely on my family and a smallish group
of friends, and I never felt the need to tell everyone I met about it.
My life with CF is uniquely mine. There is not one correct way to live with cystic fibrosis; after all, we all come from diverse backgrounds and have distinct experiences. Be confident, stay healthy, and do what you love.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Emily was diagnosed with cystic fibrosis at 3 weeks old. She graduated from the University of Notre Dame with a degree in chemical engineering and currently lives in the Philadelphia area. She is passionate about sustainability, enjoys watercolor painting
and playing the banjo, and appreciates SpongeBob references and movie soundtracks. Her faith, family, and friends are what keep her motivated. She has participated in numerous clinical trials and Great Strides events, completed her Girl Scout Gold
Award project on managing CF in college, and is a member of the Cystic Fibrosis Foundation’s Community Voice. Connect with her on Facebook or Instagram.
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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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