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.
I've spent many Christmases in the hospital; cystic fibrosis never takes a vacation. But over the years, I found ways to fill my hospital room with holiday cheer.
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I've been a veteran in-patient hospital patient for many holidays. It's awful being stuck in the hospital during this season, but with practice over the years I found some ways to make the season a little brighter from my hospital room.
I most recently was in the hospital during Christmas in 2017 and 2018. I wrote down one New Year’s resolution in 2019: to be home for Christmas. I was thrilled to accomplish that last year. No one knows what else 2020 will bring, but I'm rolling with it however it turns out this season.
I still remember my first hospital stay over Christmas when I was 18 or 19 years old. During the day it was fine.
But, in the evening and nighttime -- when everyone else went home to their families to snuggle and sip hot cocoa under a blanket and enjoy the gifts they opened that day -- I was left in my hospital room with a feeling of emptiness.
It was that first night when my CF doctor came through to visit the rooms on our floor with his guitar and played holiday songs. Tears filled my eyes -- I knew I wasn't at home with my family, but I was still surrounded by people who cared about me. The
hospital staff and our CF care team became our family, too. They were in the hospital, just like me, away from their families and missing those moments too -- but we had one another. We had
Since that first Christmas in the hospital, I tried to make the most of it. I'm not a huge room decorator when I stay in the hospital -- unless it's during the holidays. I string lights around my bed and decorate my walls with any Christmas cards I can get my hands on. I made this happen by requesting staff members bring in a copy of their family’s Christmas card to hang on my wall, if they were comfortable. I’ve posted my hospital room address on social media in previous years and asked friends to send me a card or even a drawing so that I can hang it up. As my time in the hospital went on, the love and joy in my room grew. I also enjoy bringing a small artificial pine tree or stocking to hang. Feeling the warmth and decorations of the holidays in your room truly will make a difference.
I received compliments on my fun room, which helped me feel important and validated -- sometimes hard things to feel when your body and lungs are sick. Having holiday music play in the background also created a festive ambiance that only music can provide.
COVID-19 has completely altered the in-patient hospital experience. But, I look back fondly on my most recent holiday hospital stay in 2018, when my son was 3 years old. He was just starting to understand the magic of the holidays and squealed with joy
at everything in sight. I was deeply troubled and saddened to be missing the first Christmas he would understand. The heartbreak of not being there to watch him open gifts
was crushing. Then, an idea came to my mind -- one that could only work with the help of others. I made a few phone calls pitching my idea and before long the plan was in motion: Mom will not be home for Christmas, but we can bring Christmas to Mom!
My husband, father, and mother rounded up all of our wrapped presents, packed up the large artificial Christmas tree from our living room and grabbed a rented Santa suit. Room 2014 became the Room of Christmas Cheer. We had a family sleepover on Christmas
Eve and woke up Christmas morning surrounded by each other. My husband grabbed us all cocoa from the cafeteria and -- before we knew it -- there was a loud knock on my hospital door. "Ho-ho-ho," Santa cheered as he walked in with a gift to give to
our toddler son.
It didn't matter that I was hooked up to IVs. It didn't matter that I was coughing a lot. Christmas joy filled the room bigger and brighter than we'd ever felt it.
Our son had an absolute blast; seeing excitement on a child's face will turn anyone's day around.
The staff sure got a kick out of seeing Santa walking the halls with a toddler chasing him. They were so patient with us and sat with smiles while my family brought Christmas to the mom in room 2014.
I hope you can find joy and happiness wherever you may be during this Christmas season. Especially this year, we're all in this together.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Mandie is a 31-year-old graduate of Weber State University and Stevens-Henager College. Mandie is a respiratory therapist, public speaker, and fitness instructor. Mandie serves as the 2020 Great Strides National Ambassador and is thrilled to be fulfilling
her life-long dream of working closely with the CF Foundation. Mandie loves being a mom, listening to podcasts, and skiing the world-famous Rocky Mountains. You can find her on Instagram and read her blog.
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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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