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.
On the Foundation's Facebook, we asked the question, “Have you ever experienced a random act of kindness from a stranger?” We were so moved by all the stories that we had to share them. Check out some of our favorite responses.
September 11, 2018
Remembering Claire Wineland
When Lungs Collapse
Earlier this summer, the Foundation asked members of the CF community to share a time when someone surprised them with a random act of kindness. The responses were overwhelming -- both in how many stories were submitted and their emotional impact. It was moving and reassuring to see that strangers unknowingly made lasting impacts on so many lives. As a way to say thank you for opening up about these moments, I wanted to share some responses with the CF blog community. You may want to grab a tissue!
Madeline Elmhirst: It's happened to me many times over the years. A fairly recent experience during a hospitalization was when a nurse caught me washing a few clothes in the sink. She kicked me out of the bathroom and insisted on finishing my wash herself.
Conny Goodman Lindeman: 2014, just before Christmas. It was my son's third time there in a year. Child Life brought him a Christmas present, a Nerf gun, which cheered him right up and gave him something to do, as he is required to be in isolation. One morning I left to get some breakfast and returned to find the respiratory therapists had drawn targets on their gowns, and on the windows of the room. My son was having a blast! It was so nice to see. The RTs soon got a bright idea and added a small target on the glass wall labeled 'DR' 500 points. Not 10 minutes later did [his doctor] walk by, see the target, and put his face in it! He waited for the reload, taunted my son as he shot the foam bullets, and pretended to fall over dead when one of the bullets finally hit the target. He made my son's day! I still smile at the thought of that day, and how so many people did so much (even if it was just silly things) to raise my son's spirits and help his stay be a pleasant one.
Monique Wiegand: When I was in high school, my very good friends in student council surprised me and did a cystic fibrosis fundraiser/awareness week. They put up posters with CF facts all over the halls, and raised a ton of money. I actually cried, I was so touched by what they did. I'll never forget that. Thank you Trina and Whitney, and everyone else in Stuco!!
Piper Beatty Welsh: I happened to mention [to] my nurse once that I couldn't wait to get out because I was craving a real NYC pizza slice. The next night he bought a slice at his favorite place and carried it the whole subway ride just to surprise me. It made my whole stay better!
Melanie Lawrence: Living in New England, being in the hospital for the [New England] Patriots' division championship game was a bummer. My two favorite PAs stayed late at the hospital (after a long day) to watch the game with me. We laughed so much my cheeks hurt and I couldn't have asked for a better impromptu viewing party!
Ashley Fordyce: Last year my nursing class raised money for my [insurance] deductible so I could do IV antibiotics at home (instead of going inpatient) so that I could graduate. There was a large sum of money I would have had to pay if I had gone in the hospital, but then I wouldn't have been able to finish college. I have never experienced that kind of help and kindness from so many people before and I am eternally grateful.
Mariah Hammond: While hospitalized, my birthday fell right in the middle of my stay. I was tired, nine months pregnant, and bummed because I was spending my birthday in a tiny hospital room. The nurses on my floor gathered up candy, flowers, and a gift from the gift shop downstairs and wrapped it all up in tissue paper and a HUGE adult diaper. They made a card for me and sang "Happy Birthday." I hadn't even mentioned it being my birthday, they had just noticed it on my paperwork. Then, they had room service send up a big, chocolate cupcake, completed with a candle on top. Transferring to the University of Kansas Medical Center has been the best decision I've made for my health.
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Senior Web Content Coordinator, Cystic Fibrosis Foundation
Bethlehem is a senior web content coordinator at the Cystic Fibrosis Foundation. In her role, Bethlehem manages the editorial calendar, contributor relationships, and production process for the CF Community Blog. She also works to implement the editorial calendar for other areas of the site, and maintains a consistent look and feel throughout cff.org. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family. Her guilty pleasures? Watching YouTube vlogs and eating tons of chocolate.
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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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