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.
There have been a few moments over the past four years that have provided us with perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis.
November 2, 2015
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I struggled for a time after Anna's cystic fibrosis diagnosis, wondering how it would change our lives and shape our kids. What I've found is that it's impossible to not be changed at all, but that some of those changes can be positive. This year, I've seen just how much both of my children, Anna, 4, and Jack, 6, have learned, and now understand, about Anna's CF.
One thing I've come to realize is that my children are who they are, despite having CF in our lives; but I believe that it has deepened the traits they were born with. For instance, Anna has taken her fearlessness and channeled it into an important part of staying healthy. Jack has always been the sweetest and most compassionate boy, and this has only deepened his intense love for his sister. I still worry sometimes about the added responsibility for both of them, but I also see how it helps them grow their confidence, their independence and their relationship.
We have never let Anna's CF define her, but it is a part of her that is always present. It may not always be on the forefront of our minds, but it's there like any other trait, as present as her bouncy blonde curls.
Recently, Anna was excited to find out that she is a card-carrying member of the X-Men. While watching the movie one night, we were trying to explain mutations and how the X-Men got their powers and it provided the perfect way to work a little CF teaching into our lives. Anna got to learn more about how she was born with a genetic mutation -- how it gives her sticky mucus and means she needs to do extra things to take better care of herself, but it's also how she gets her super strength and bravery.
These little moments, which have been cropping up for the past four years, have provided us with the perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis. Jack starting school provided us with the opportunity to teach him and Anna about how germs spread and the importance of washing their hands. Going on hikes gave us the opportunity to talk about things to avoid outdoors, like stagnant water. Going to the beach and pool in the summer was a learning opportunity about the importance of Anna staying hydrated. Playing soccer and doing ballet was a good way to explain the importance of being active in order for her to stay healthy. And the X-Men gave us the opportunity to talk about genetics, and what makes each of us unique.
Every doctor's appointment has served as a learning opportunity as well. We explain things as they're happening for both of them. Anna has always done best with explanations about what exactly is happening and why. This might sound wild for a 4-year-old, but like I said, super powers! She hates surprises, so as long as she understands what is happening, she will feel like she has some control and can handle anything -- never even shedding a tear during blood draws.
We've also greatly benefited from some resources we've found, like the book Who I Am by Genentech, which was given to us at the Johns Hopkins Clinic. We were also sent the book Sticky Icky Booger Bugs by Sherry Frith, which was another creative way for them to understand what was going on inside of Anna's body in a way that resonated with children.
Complete honesty, answering questions and embracing learning opportunities as they arise is what has worked for us in helping our children understand Anna's CF. Our approach may not be the approach for everyone, but I know that for us it has taken away a lot of CF's power and ability to produce fear. There will always be unknowns, but we are always willing to share with them what is known.
I can see Anna's confidence growing in caring for herself and staying healthy, and I see her determination to get better when she isn't healthy. I see Jack's confidence in caring for her and helping her with her therapy or medicines. I can see his confidence when he explains to her things that aren't safe and why. I see my happy and loving children working together, and I know that, for now at least, we're doing it right.
Mother of a child with CF
Kate is married to her high school sweetheart Alexander and is raising their two children, Jack and Anna, in Pennsylvania. Anna was diagnosed with CF shortly after her birth. An English major at Penn State University, Kate decided to use her passion for writing to inform others about CF, keep everyone updated on her family and fundraise for the cause on her blog SisterFibrosis.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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