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.
With Mother's Day just around the corner, we asked our community to tell us about the women who inspire them and take their breath away. Here are some of the responses we received.
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We asked, you answered.
With Mother's Day just around the corner, we wanted to do something special for mothers in the cystic fibrosis community. A little over a week ago, we asked you to share with us on social media the women you are inspired by -- specifically, mothers with CF or women who have a child with CF -- whose story has encouraged or moved you.
Read on about some of the women you highlighted: the women who take our breath away.
Emily Ingram: My mom, Amy I., is the most selfless, gracious, and hardworking mom I know. I was diagnosed with CF at birth, but Mom always pushed me and my two siblings without CF to succeed. She took care of all my health needs without making me feel limited in any way. Even when my health got rocky, I was still able to stay in school and graduate high school and college at the top of my class because my mom was always there to help me whenever I needed it. Now that I'm in graduate school, she has never hesitated to leave her life behind to come be with me for as long as I need. No one knows or understands everything she does for me, and she deserves to be recognized.
Cheryl Fischer: My sister, Suzanne M., has CF and is an amazing mother to her daughter, Addison. Suzanne balances hours of vest and nebulizer treatments every day with an active toddler, without ever skipping a beat.
Joyce Myers: Our daughter-in-law, Brittney, amazes and inspires me every day with her constant care and devotion to our two little grandchildren -- both of whom were diagnosed with CF before birth. Both have gastrostomy (G) tubes, require ongoing therapies and treatments, have had numerous hospital stays, and have regular appointments and checkups -- many which are one or two hours away. She has become a mommy, nurse, therapist, secretary, and devoted advocate for her two young kids. She defines the term “Super Mom,” and I am blessed beyond measure to have her as the mother of our grandchildren.
Michelle Wright: From day one, Karen M., the mother of a 19-year-old with CF, has lived and literally breathed her engagement with this illness. She has fundraised, researched, spent countless nights at the hospital, touted for drugs, traveled to speak to other CF parents and children, participated in events, and spoken publicly about the Cystic Fibrosis Foundation. Karen is such an inspiration to not only her son, Tom, but to every person with CF.
Kelly Scarrott: My sister, Kirsten M., has three beautiful children -- the youngest of whom has CF. She knew nothing about the disease when the doctor called to tell her that her newborn son had CF, and was completely devastated. But since then, she has learned everything she can about CF and has already raised thousands of dollars for the CF Foundation leading up to Great Strides. She's also decided to hold a silent auction to benefit the Foundation in his name. She has always been intelligent, determined, and stronger than anyone I've ever met, but to see her use all of her amazing talents so selflessly leaves me in awe of her every single day.
Emily DeLafayette: My mom, who has CF, married my father and started raising his two sons. Then, she had me. Since the day I was born, she has made me know that I'm loved and pushed me in every aspect of my life. She went to my games, attended my plays, taught in my Sunday school class, and has done everything in her power to give me the best life possible. She started saving for my college years before I decided where to go, and kept me moving toward the goal of college graduation. She hasn't let CF stop her, and has loved my brothers and me unconditionally. She is a fighter and the most amazing woman I have ever had the pleasure to know and love.
Jillian Goodwin: My mom, Kim H., gave birth to me while serving as a flight surgeon for the U.S. Air Force, and knew within a few weeks that something wasn't right with my health. At the time, she was stationed overseas in Japan and had to fly halfway around the world to San Diego, Calif., before a doctor was finally able to diagnose me with CF at 3 months old. For the next six years, she traveled from Japan to Hawaii every three months to take me to doctor's appointments so that I would have the best quality health care possible for my CF. After moving back to the states when I was 6, she continued to make every sacrifice necessary, and eventually chose to give up her career as a physician to stay at home to homeschool me and take care of me and my five siblings.
She made sure that I had what I needed for my CF without giving me special treatment, and always encouraged me to be independent and proactive about my care. She has done everything from driving me to the ER when I was having a severe drug reaction and cardiac arrest, to cleaning my nebulizer cups when I didn't have the energy, to proofreading my college papers and acting as a caretaker when I was too sick to go to class. She helps with anything and everything that I ask, no matter what. Today, I am 25 years old and I wouldn't be half the woman I am without her and her unconditional love.
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. 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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