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 a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.
September 21, 2015
Orkambi: A Life Sentence
An Easy 3 Miles
It's 10 a.m. on a Sunday and we have received notification of new test results. My son had the CT scan on Friday and I'm surprised the results are available so quickly. While I'm overly eager to enter my username and password to see what the report says, I'm equally hesitant knowing that these results might change our lives. I worry about how the results will change his treatment plan; how it will impact our schedules; how we will handle one more thing. I wonder what it would feel like for things to just remain the same.
This is my struggle as a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF, for my other kids, for my marriage and for our lives. We've tried to normalize something that's so far from normal -- and while that's perhaps not the right thing to do, it's what we've chosen for our family. We've identified priorities and built life plans and work plans and treatment plans around them. And now with test results hanging in the balance, I wonder how those priorities will have to shift, who will be disappointed and how we will go forward.
The results could show something small and easily treatable. But I'm the one who has to find the time to manage that small thing. I'm the one who has to make five phone calls over two days to coordinate its arrival, keeping me from volunteering in my daughter's classroom. I'm the one who has to change our sports schedule so that we can add just one more thing to our day. I'm the one who has to reorganize carpool when we have to return to the doctor for a follow-up, and then have to pick up dinner on our way home because we just don't have time to do it all. I'm the one who has to answer the tough questions asked by my boy about why he has to do just one more thing.
And that's if the results tell us it's something small and easily treatable.
I'm really not complaining about all I have to do, because I often consider it a privilege to see the world through this lens. I'm simply highlighting my capacity to do so.
My time, energy and emotional capacity are not infinite and the cognitive burden of this disease is great.
It's Sunday, and I'm stuck between knowing and not knowing. While I usually have a "glass half-full" attitude, I've decided to wait until tomorrow for the change that may be coming. Regardless of the results, almost nothing can change today, so I'll live in this life for one more day and take whatever tomorrow brings ... tomorrow.
Mother of a child with CF
Erin is the mother of four young children, including Drew, who has CF. She works at Cincinnati Children's Hospital on the pulmonary team as a Family Partner. In her spare time, she can be found at the park with her kids or learning new things on social media. Read her blog, 66 Roses. Follow @ekeeleymoore on Twitter.
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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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