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.
Infection prevention and control is so important after a lung transplant, but often I am left with more questions than answers about how to protect myself.
January 25, 2019
Chasing the Moment
The Family I Never Wanted
Infection prevention post-transplant: What does that mean? Does that mean you have to live in a bubble for the rest of your life? Or does it mean living the life you were meant to, but with caution, by taking certain measures? You did not get “new” lungs
to live in a bubble that basically limits you to the things you were physically incapable of doing pre-transplant. But you have to protect yourself from infection because infection risk is increased post-transplant.
I'm a cautious person and I sometimes think a little too much about the way bacteria and viruses are transferred to people and all of the things that I touch that have been touched by others
-- the chain of germ transfer I guess you could call it. Anything I touch inevitably gets on my phone, water bottle, and steering wheel, unless I disinfect those things proactively every day. I definitely don't get around to doing that, but on occasion
I will try to clean my phone, especially when I'm traveling.
These aren't things my care team went over with me. But there are many things that health care providers inform you about, both pre-transplant but mostly post-transplant. Some of the very many infection-related questions my caregiver, who is my sister, and I asked were about
the things I could and could not do with new “air baggies.” When, where, and how long would I have to wear a mask? When would I be able to fly and what would that look like? Would I have to wear a hazmat suit or just disinfect my seat, tray table,
and wear a mask every time I flew for the rest of my life? Planes are wicked dirty anyway, so I don't mind looking like I have the plague. Hey, fewer people will want to come near you, which sometimes leads to no one sitting next to you!
It's been a year and a half after my double lung transplant and I still have questions for my transplant team.
My doctor jokingly said at my last appointment that he'd never had a patient ask such interesting -- and random -- questions. I suppose my question about having plants post-transplant (I can't) and finding a loophole about air plants (I can!) was one
he hadn't been asked before.
One problem in the world of transplant and care centers is that answers to questions aren't going to be uniform. They may follow different guidelines. I have many friends who have CF and have had transplants and not all
of our centers have the same “rules.” Yes, a lot are the same but why such a difference in yes and no? I guess some doctors may have more experience with different outcomes so their answer to something may be different than another doctor. Maybe some
are just super cautious and say no more to things because they just don't want something bad to happen. Sometimes there just aren't enough studies or knowledge about certain things so they just say no to err on the side of caution.
No matter who you are or what stage you're at, questions are good! Don't hesitate to ask your healthcare providers things you wonder about or things you've seen other people with CF do, whether you agree with it or not. At the end of the day you will
do what's right for you and what lets you live your life. If you want to get a pet chicken and snuggle with it every night, then go for it. But know the risks -- and no, I don't suggest snuggling with chickens, they can be dirty and carry certain
bacteria. There's nothing wrong with being a little cautious when it comes to your health. I will always ask questions until the very end.
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Adult with CF
Rima was diagnosed with cystic fibrosis around 4 months old. A graduate of Franklin Pierce University, she earned her bachelor's degree in environmental science. She is currently unable to work, so she is focusing on health full time. She received a double-lung transplant at the University of Minnesota Health in Minneapolis in May of 2017 and plans to move back to Colorado soon. Follow Rima and her sister, Laima, as they spread awareness about CF on Instagram at lung_story_short or on their blog, Lung Story Short. You can also follow Rima's personal Instagram account, rimasaurusrex.
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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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