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.
People who are not used to isolation may feel bored during this pandemic-driven physical distancing. But people with cystic fibrosis are experts at keeping themselves busy and fulfilled at home.
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Time in isolation is not new for those of us living with cystic fibrosis. It's part of our normal life and something we are pretty much used to. In my perspective, everyone in the world is now living the life of a person with CF and hopefully gaining
a new appreciation for what those living in isolation -- for a good portion of their lives -- go through.
As a person who is part of a vulnerable population at higher risk of developing severe illness from COVID-19, I can say with all certainty that life in isolation isn't all that bad. I can tell you from my experience that living in isolation isn't hard.
I know it's easy for me to say because I am used to it, but it's all about perspective. When I'm home in isolation doing IVs or doing some other treatment that requires me to stay put, I just simply find things to do that's not binge-watching
every show on Netflix, Hulu, or Prime; but I won't lie and say I haven't been guilty of watching “Cops,” “The Witcher,” or “Stranger Things,” because I have. Being in isolation basically means that my home has become more than that -- it's my everything.
I read a lot of different books -- I enjoy comic books and fantasy novels. But whatever you like, read about it! I love cooking,
so I use my time to try different recipes and methods of cooking. There's nothing wrong with knowing how to cook anything and everything you like. I also clean. I love organizing and being in isolation allows me to declutter my house and closet.
I work out too. Just because you are in isolation doesn't mean you can't work out. I like to do online workout videos. The lucky thing about living in a world where everything is accessible
online is that everything is online! Yoga, cardio, aerobics, etc. And because you're isolated at home, you don't have to worry about looking silly in front of people. Just be active!
You can also spend time with loved ones (humans and pets). In a world where life is so busy and hectic, isolation kind of forces us to spend time together that we otherwise wouldn't find time for.
Fall in love again with your spouse or partner by getting to know them again. People change over time, so maybe discover something new about each other.
Get to know your kids and what they are up too. My husband and I do bad movie nights -- we pick a bad movie and watch it. We spend time talking about things at random and even play board games. I've discovered my hatred for checkers, and I am awful at
rock, paper, scissors. But we have fun and enjoy each other. After 10 years together, it's nice to know that my husband and I are still goofy people at heart! I also play video games. Not to toot my own horn, but I am pretty good at Fortnite.
Isolation isn't that bad when you find ways to be productive and make the best out of a situation that you cannot control. Life is hard, and when you add isolation to it, it's not easy for those who aren't used to it. Isolation is my normal
and my way of living because I have CF, but it's also not bad when you turn lemons into lemonade and find a way to smile and be positive during hard times.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Marieliz has atypical cystic fibrosis and bronchiectasis. She is a member of the patient advisory council at Presence St. Mary and Elizabeth Medical Center in Chicago, where she ensures patients receive top care and attention from medical staff. Marieliz joined the Cystic Fibrosis Foundation’s Adult Advisory Council in May 2018 and enjoys getting involved in the Foundation’s other projects as well. She currently lives in Chicago with her husband, Michael, and they share a 4-year-old adopted cat named Penelope Marie.
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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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