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.
My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
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Arjun pooped. Everybody does. There's a book about it. So, the fact that my son, Arjun, pooped might not seem like a big deal to some. But, because Arjun pooped, he avoided having intestinal surgery. Arjun just turned 4 years old, and he has already had nine intestinal surgeries, so it was a huge relief to my husband, Charlie, and me.
We often say, “You'd never know by looking at him, that he's been through so much.” He has, though, believe me. He was born at 32 weeks and needed surgery for an intestinal blockage (meconium ileus) a few days later. Arjun has spent more than 6 months of his short life in the hospital.
He also has a growing awareness of his CF and the daily burden it places on him. He has grown to hate IVs, nasogastric (NG) tubes, and throat cultures. He increasingly resists doing his daily airway clearance treatments.
But Arjun is a resilient kid, and his personality is infectious. He's the one who lifts our spirits when he's in the hospital, joking with us and members of his care team, bringing a smile to their faces even though he's sick.
In spite of his CF, Arjun leads a pretty normal, active life. In addition to attending preschool, he has taken up gymnastics and swimming. This Halloween, he decided to dress up as the Earth because he loves planets. Do you know what a dwarf planet is? Neither did I. Arjun will explain it to you and tell anybody who will listen all about planets.
Charlie and I are numbers people. We do our research. We trust the quantifiable. We know that if Arjun had been born in the 1950s, we wouldn't have been able to imagine the kind of future for him that we can now. Now, more than half of people with CF are older than 18. Many are finishing advanced degrees, getting married, and having children of their own.
That's why we have so much respect for the CF Foundation, what it has accomplished, and its ambitious plans for the future. We are encouraged by new medications, like Kalydeco® and Orkambi®, that have been developed recently. For people with certain mutations, these medications treat the underlying defect of CF, and they promise longer, healthier lives to those who can benefit from them. Clinical trials of the next generation of these drugs may be even better.
We hope for a long, healthy life for Arjun. But, his mutations are rare, and like many with CF, he will not benefit from either Kalydeco® or Orkambi®. That's why we advocate for new treatments that can help people with rarer mutations like Arjun, and other children and adults with CF, and one day, a cure. That's why we're making a donation to the Cystic Fibrosis Foundation and why we are asking you to do the same.
Mother of a child with CF
Arathi is the mother of Arjun, 4, who has CF. She has an MBA from the NYU Stern School of Business and a B.S. from the University of Maryland Smith School of Business. She is a director at American Express, and active fundraiser for the Los Angeles Office of the Cystic Fibrosis Foundation Southern California Chapter. She lives in Los Angeles with her husband, Charlie, and Arjun.
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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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