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 the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
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When you are a parent of a child with cystic fibrosis, you're used to visiting your fair share of doctors and specialists.
But, what role does your pediatrician play in CF care? Who should you call when your child is sick? Whose advice should you take regarding prescriptions? What do you do if your doctors have differing opinions?
Our CF clinic providers partner with our pediatrician to provide the best care for our kids.
To be honest, it's complicated. Though I still don't always know where to turn, here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy:
I've learned that despite our pediatrician's numerous accreditations and honors, cystic fibrosis is not his specialty. Although he knows an awful lot about CF, he admittedly does not know everything about the disease and there are times when I know more
about drug advancements and research than he does. He can, however, basically diagnose a mystery rash over the phone and knows when my kids have strep throat just by looking at them.
Balancing the opinions and recommendations of your CF care team and pediatrician can be tricky. If my kids are having respiratory or gastrointestinal issues, I will ultimately go with the
CF care team's recommendations because they are the CF experts. At the same time, I appreciate the outside perspective that the pediatrician can provide about how common a particular ailment is to the average kid.
I can't tell you the number of times I've not known who to call when illness strikes, but I usually end up calling both my pediatrician and our CF team. It just makes me feel better to check in with everyone.
Both practices are looking out for the best interests of my kids, so I usually check in to see if what we are experiencing is a normal kid thing, normal for a CF kid thing, or something that requires an office visit.
Well visits and even sick visits to the pediatrician give me peace of mind when he can tell me that my kids' lungs sound clear or that a cold is only upper respiratory. While he will escalate any serious respiratory issues to our CF clinic, our pediatrician
can provide a preliminary status report and reach out to our CF care team as needed. It's also much easier to schedule a last-minute appointment with the pediatrician (ours also has weekend hours), which can save some worry when I'm waiting for the
CF clinic to open.
Because sticking to an accredited CF care center makes it more difficult to switch specialists, you have far more options when it comes to choosing a pediatrician. Ours played a major role in connecting us to our CF clinic during the newborn screening and diagnosis process with our son, so we felt he was a part of the team from day one.
He always makes a point to help our kids feel normal, covering general milestones, questions, and exams before asking about CF. He even asked our family if we would be willing to talk to one of his students about how we balance chronic illness with typical
family life because he's so passionate about normalizing the disease for us.
Our CF clinic always sends a post-visit report to our pediatrician, which means that -- in addition to the care team reviewing my kids' charts -- there's another set of eyes looking over blood work, vital signs, and prescriptions. Sharing this report
also makes it much easier on me because our pediatrician has a list of all current medications and CF concerns on hand.
At the end of the day, having too many great doctors is definitely a problem I'm willing to have! By working together and keeping everyone involved in my children's care in-the-know, I feel confident in my kids' health care providers and their ability
to continue keeping us on a path of good health.
What are some of the ways you partner with your pediatrician and CF care center?
Mother of two children with CF
Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.
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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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