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.
Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy.
March 7, 2019
My Experience Improving Care Behind the Scenes
Watch the Vlog: 2 Sisters Talk Five Feet Apart
Attending cystic fibrosis clinic is a routine part of my life. It's a day full of emotions, despite the fact I have gone 150 times in my life so far. Before each clinic appointment, I worry about my pulmonary function test (PFT) numbers and what will happen as a result of the visit. In addition, talking
to every member of my CF care team is a long process, even when all goes as quickly and smoothly as possible.
I usually prepare a list of topics to discuss using my phone's Notes app to make sure I don't forget anything. I still forget items. So, after my last clinic appointment, I decided to start a new list -- a list of things I wish my CF team knew about me
-- in an effort to be more open about my needs and preferences. Although it can be hard to open up at times, I hope that sharing these five things about myself will make CF clinic days just a little easier:
Then, after the test, I always expect too much. When I don't see an increase in my numbers, I always feel defeated. I'm always on top of my meds, and I have a career,
kids, and a lot of things on my plate. So, when all my hard work and energy doesn't show in results, it's beyond upsetting.
I know my team needs to fully understand my feelings in order to effectively treat me, but it is still something I struggle with. Survivor's guilt and feeling like I should be tougher also fall under this category.
For example, I have had a dozen big surgeries -- some life-saving, some with months of recovery. Yet, my scariest surgery was on my eyes. I was told they were only doing one eye, but when they got in they realized that the muscles were bad in both. So,
when I woke up and both my eyes were hurt and bandaged, I thought they messed up and I was terrified. But, could I freak out? No, because I thought, “I have had way worse than this. I have CF, I'm brave … so deal with it.”
So yes, it is hard letting myself feel scared or upset in front of anyone because I feel I need to be brave. And even though I know I am actually pretty brave, I need to remember I'm human, too.
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Adult with CF
Cheriz lives with her husband, Andrew, near Peoria, Ill., where she is a freelance blogger and stay-at-home mom. Cheriz has taken on several volunteer positions with the CF Foundation, including serving on the Partnerships for Sustaining Daily Care Champions Committee, Community Voice, and the Adult Advisory Council. Cheriz and Andrew have a national Great Strides team and co-lead several CF events fundraising in their community. They are foster parents, and in their spare time, they work on their family blog, MoreThanDNA.org, to spread awareness and CF education.
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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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