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.
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
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Frequent hospital stays are an unfortunate reality for many of us living with cystic fibrosis. And, if you're weird like me, you like to have a checklist of all the things you take with you to the hospital. I have even Googled “checklist for CF hospitalization” before, but the only things that came up in the search results were for pregnant women. That can be very helpful if you're pregnant, but unfortunately, it's not quite as relevant for the rest of us.
So, why does this matter to me? Why do I need to have a checklist for hospital stays, especially when I'm so accustomed to going to the hospital three to four times a year? Why would I search for “checklist for CF hospitalization” on the internet? Maybe I'm the only crazy person who does that. But honestly, I like to see what others find important to take to the hospital, as it may make me think, “That's a great idea! I want to remember to take that to the hospital the next time I have to go.”
For example, I know that one woman likes to take fairy lights to hang up in her hospital room to make it feel homier and less sterile. After all, the hospital becomes our home for the two or so weeks that we have to be there. You might as well try to make it as comfortable as possible.
That's the main reason why I've searched for a hospital checklist online; I want to know how other people make their temporary homes more comfortable.
On the off chance that there IS someone else out there who searches online for this too, I wanted to create a hospital checklist for the CFer. This is my personal checklist and it will be different from what others consider to be necessary for a comfortable environment. But maybe, just maybe, you'll find something interesting for your next hospital stay.
Obviously, I list the basics: deodorant, toothbrush and toothpaste, clothes, etc. Then, there's the fun stuff.
This is my checklist of hospital necessities: the things I need to create a comfortable environment in the hospital. What does your checklist include?
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Adult with CF
Anna has a Bachelor of Science degree in Patient Advocacy. She also volunteers her time at National Jewish Health as the chair of the Patient Advisory Council and as the patient representative for the CF Quality Improvement Team. She also participates in the Foundation's Community Voice. When she isn't spending her time at National Jewish or the CF Foundation, she's drinking coffee, building relationships, and spending time with her two kids, Lily and Liam.
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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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