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.
Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
February 20, 2019
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Realizing the Power Behind My Voice
When people with cystic fibrosis look at our futures long-term, chronic infections are the most frightening of beasts. Chronic infections make it difficult to keep our lungs stable. Chronic infections often are the reason we need double-lung transplants. Not only do chronic infections affect our physical health, but the fear that they can cause is another burden we carry.
My sister Alyssa's death from CF, while tragic, is not unlike other stories of people who live with CF. For most of her life, she was in and out of the hospital, undergoing sinus surgeries for rampant sinus infections and dealing with gastrointestinal issues. She tried to remain normal in whatever way she could. She was never able to return to a healthy baseline despite multiple hospital stays a year and spending almost as much time on IV antibiotics as she did off them.
By 2012, my sister's chronic infections recurred enough that our family became concerned that she would not be able to recover her lung function whenever she had an exacerbation. It's no doubt that people with CF have a solid repertoire of medications available to treat infections and exacerbations, but it is a very real concern that we'll eventually reach a cliff, where our current go-to medications that consistently work well will suddenly stop working from one exacerbation to the next. In early 2013, my sister reached that point.
One of the hardest moments of my life was receiving that call. There had always been more options for my sister's infections, but her doctors at the time felt like they had run out. My parents called me, while I was a freshman at Kansas University, to tell me that no options remained. I remember feeling shocked, angry, and heartbroken. It didn't seem like that was possible. We are living in the 21st century. How could it be possible to not be able to treat what appeared to be a simple infection? Years later, I realized how naïve I had been. The fear of an intractable infection remains.
My sister's story took a sharp upward turn in the days after that call. She surprisingly recovered but still eventually needed two double-lung transplants. In March of last year, she succumbed to chronic rejection. Alyssa's last six years of life -- chronic infection followed by lung transplantation -- is something that I hope to avoid. The thought of this has led me to call for better anti-infectives for the CF community and world at large.
It is important that the scientific and medical establishment understand how critical it is for the CF community to have hope for better medications on the horizon. Hope is the lifeblood of communities of people with chronic disease. Hope alleviates fear and improves the quality of life for the CF community.
I believe firmly in the research establishment hearing and listening to the voices of the people in the community.
Because of the urgent need for better anti-infectives, members of the Research Voice advisory group and I felt strongly that the first ResearchCon focus on infections. For the last couple of months, I've been helping to plan this virtual event, and it's been an honor and a privilege.
I'm excited about it mostly because of how strongly I believe in discussing this pertinent topic within and outside the CF community of adults. I encourage people to attend this event; there will likely be opportunities to share your voice, contribute, and ask questions in some of the collaborative sessions. It will be a great chance to see what's happening in the world of research directly from doctors and researchers.
My hope is that, in the near future, nobody has to hear that devastating news -- that their infections have become resistant to all available treatments.
ResearchCon is from 7-10:30 p.m. EST on Feb. 28. The event is free, but you must register.
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Adult with CF
Tré earned a bachelor’s degree in biochemistry with minors in mathematics and biology at the University of Kentucky in 2016. He first worked in a CF lab during his undergraduate career at UK and in Dr. J.P. Clancy’s lab at Cincinnati Children’s Hospital Medical Center after graduation. He is a co-author of the article “Detection of CFTR function and modulation in primary human nasal cell spheroids” in the Journal of Cystic Fibrosis. He frequently exercises to stay in shape and writes at trelarosa.com.
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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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