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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
People in the CF community do so much every day. Beyond doing treatments, going to clinic appointments, and doing countless other things to stay healthy, some of you are writing books and music to help others with CF and give thanks for your loved ones. Read about what three people with CF have created this year.
December 19, 2018
CF Is Nothing But a Plot Twist in Edens Story
Finding the Strength to Ask for Help
Singer-songwriter, For Mother
I wrote this song for my mom, the strongest person I know. When I was 19 years old, my cystic fibrosis started getting serious, and I began to face the frightening reality of what it means to live with this disease. But I realized that I wasn't alone
in this feeling -- my mother had been dealing with this reality since the day I was diagnosed. When I was too young to understand the gravity of my disease, my mother handled the fear, anxiety, and grief with grace, humor, and hope. For the first
time, I reflected on how difficult it must have been to make a small child feel safe when there was a constant threat looming. I can't imagine the strength it must have taken to remain the brightest source of joy and comfort in those times when she
As a child, when I was in the hospital for weeks at a time, my mom would pack suitcases large enough for me to fit in and decorate the room so beautifully that no one would recognize it as a hospital room. She would bring puzzles to pass the time, essential
oils to combat the hospital smell, and enough books and CDs for a lifetime. We made pro and con lists about being in the hospital, and she helped me see that everything has a good side if you pay enough attention to see it.
Now that I am older, my mother can't shield me from the fear. She is not so much my protector anymore -- she is my comrade and my confidant as we continue to navigate what it means to live with a life-threatening illness. I am eternally grateful for everything
this woman has given me. This song and video is for all the mothers, fathers, and caretakers of people with CF -- we couldn't do this without you.
For Mother is available on YouTube.
Author, The Guide to Gusto
Ralph Waldo Emerson said, “Nothing great was ever achieved without enthusiasm.” Sarina Sandstrom, a 24-year-old with CF, is proving that great enthusiasm, or gusto, can be achieved in daily life through intentional self-discovery. Her new book, The Guide to Gusto: 20 Ways to Learn, Love & Leverage Yourself to Unlock a Life of Happiness, Purpose & Productivity is an ode to the individual. Through 20 experimental strategies and action-oriented resource evaluations, she guides readers to learn, love, and leverage their unique selves to reclaim their enthusiasm for both work and life.
“CF has given me the enlightening perspective that every single day is a gift. I've too often witnessed people living miserable, passionless lives, doing what they believe they think they should do rather than pursuing what they want and love to do. This
book is my effort to inspire others to use their unique gifts to supercharge their happiness and purpose in both work and life,” Sarina said.
CF has motivated Sarina to live with great enthusiasm and clarify her mission to inspire others to do so as well. Her book is a combination of her passion for living a full life, her experiences supercharging productivity and effectiveness in business,
and her love of writing and sharing ideas.
Gusto is available on Amazon. To learn more about Sarina and her work, visit her website.
Living with cystic fibrosis was the lesser of my worries as a child, having grown up in an abusive home. By my 23rd birthday, I'd not only lived with cystic fibrosis and learned to cope with, and even embrace, my mortality and physical limitations, but
I had also escaped and healed from the past abuse and traumas of my childhood. I found strength and passion after I broke free of the limiting beliefs that I was carrying around based on the poverty and abuse I once endured. I started my own business,
wrote and published my first book, and started coaching other CFers to embrace their lives and to be exactly as they are. I help them open up to the joy surrounding them and use the weight of their journey to fuel a brighter future.
Embrace Yourself is a book about recognizing how incredibly powerful and resilient we innately are. The book is a source of power and inspiration that reminds us to dig into what makes us who we truly are, get real with ourselves, and overcome the struggles
and beliefs that have us hesitating instead of stepping forward and living a joyful life.
This book and the accompanying online course are meant to guide my fellow CFers and survivors of abuse and trauma into recognizing their own power and overcoming the burdens of shame, guilt, and fear.
Embrace Yourself is available on Jessica's blog, Amazon, and most online bookstores.
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Senior Web Content Coordinator, Cystic Fibrosis Foundation
Bethlehem is a senior web content coordinator at the Cystic Fibrosis Foundation. In her role, Bethlehem manages the editorial calendar, contributor relationships, and production process for the CF Community Blog. She also works to implement the editorial calendar for other areas of the site, and maintains a consistent look and feel throughout cff.org. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family. Her guilty pleasures? Watching YouTube vlogs and eating tons of chocolate.
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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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