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.
The only thing that is certain in my life is the uncertainty of my teenage daughter's next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
October 6, 2015
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Childhood memories can often resemble a calendar filled with birthdays and holidays. Growing up with cystic fibrosis makes childhood look more like a timeline that is marked by doctor visits and hospital stays. This past Labor Day, Betsy asked me if I remembered Labor Day last year. I didn't. She said, “How could you forget? I was admitted to the hospital.”
We've met Santa in the hospital, as well as some of our favorite San Antonio Spurs spreading holiday cheer. We've spent Valentine's Day in the hospital decorating cookies … and the list goes on.
Throughout these years of shifting schedules, one constant remains: the uncertainty of when the next hospital stay will be. This is taxing on people with CF and their families. CF kiddos miss a lot of school sometimes. They just do. Finding the best way to manage these times with the school can often be tricky.
I've found that Individualized Education Plans (IEPs) can help, but the meat of making things work for everyone is communication and education. Educators who understand CF will make the day to day, and lengthy hospital stays, easier for their students.
This was always pretty manageable in elementary school. Middle school, however, presented new challenges. As the work load increased, I found Betsy exhausting herself trying to catch-up on work that seemed almost silly to me. Betsy was also missing more than just classes and schoolwork. She wasn't eating lunch with her friends, walking in the halls between classes and catching up on the latest gossip (no, I'm not the mom that thinks my girls are above this teenage tradition). But on the flip side, her time in the hospital offers experiences that most kids don't get (or want). Betsy communicates with more adults than most adults do. And not just any adults: clinicians, researchers and medical students, to name a few.
By the time high school rolled around, I had (well, I thought I had) become pretty well-versed with the routine. Except for the part where school was truly real and serious now. We were not coloring and tracing anymore. Not even close. So when a hospitalization was needed within weeks of Betsy starting school, I was a bit lost.
In true Betsy fashion, she managed this with no prompting. Betsy emailed each of her teachers individually. She let them know that she was in the hospital and expected a two-week stay. Any homework could be emailed to her or sent with her sister. She made sure there was a tutor on staff at the hospital. This tutor was certified in all classes, including five languages up to grade 12. By the time I contacted all of her teachers, it was already done. All those years of my meeting with teachers and fielding emails and phone calls to educate them about Betsy's needs and diagnosis had paid off in an unexpected way. She had simply handled it on her own.
At the start of this year (Betsy's sophomore year), we met with her counselors and teachers to discuss her IEP and workload. After fielding a handful of questions, the teachers all agreed that, during extended absences or hospitalizations, they would not hold Betsy accountable to the “fluff” work that other students are given to keep them on task. She will need to communicate with them on her own, arrange meetings upon her return to school and turn in the mandatory work. But as long as she can demonstrate the concepts that were covered during her absence and pass the test, the fluff work will not be an added burden for her. We call that a win.
Mother of a teen with CF
Mary is a mother to three teenage girls. She is on the Board of Directors for her local CF Foundation chapter. Mary has advocated through all media outlets on the local, regional and national levels for the Foundation and several other charities that are close to her heart. She also currently serves on the Parent Teacher Organization Board at her girls’ high school and is employed as a CF Client Advocate for the CF Services Pharmacy. Mary and her family reside in South Texas.
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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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