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.
When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.
November 27, 2017
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In 2015, I took a somewhat familiar -- but always intimidating -- step for a cystic fibrosis patient: walking into a new CF clinic to meet a new doctor and care team. Usually by necessity but occasionally by choice, I have walked through new clinic doors probably a dozen times in my 33 years. Doctors moved away or retired; I moved across city and state lines to pursue higher education and a career; or, the doctor just seemed like the wrong fit for my case. This time, though, none of those reasons applied.
Although I adored my CF care team, I was in search of something more: lumacaftor/ivacaftor (Orkambi®), which my current clinic was unable to access for me due to its unique care structure. With my doctor's blessing and encouragement, I contacted a second CF clinic an hour away. This new clinic had been a clinical trials study site for lumacaftor/ivacaftor, so I was hoping the doctors there would be able to assess whether I should try the new drug. The new doctor at the second clinic agreed that I would be an ideal candidate for lumacaftor/ivacaftor. She also confirmed that I could continue to be a patient there while still seeing my other CF doctor. And so, two CF clinics began to share joint custody over my care.
While I do seek care from two different clinics, the phrase “joint custody” implies that I play a passive role here, and that couldn't be further from reality. The truth is that navigating two different CF care teams has made me a more engaged patient and advocate for my care.
My first clinic is much closer to my home and significantly smaller, which makes it my go-to spot for labs, no matter which doctor has requested them. Because of its small size, there is only one CF doctor there, and she answers her personal phone when I call with a question. The wait times for phlebotomy are typically short, and I have become well-acquainted with the friendly man at the front desk who stamps my parking ticket during each visit.
On the other hand, the second clinic is part of a large, nationally recognized university hospital. It has an entire team of CF doctors and nurses available for rapid email feedback, consultation, and appointments. This clinic has also connected me to phenomenal resources, such as a dedicated CF pharmacist, who comes to my appointments to ensure I'm enrolled in all the right prescription drug discount programs and can answer my questions about dosages or drug interactions.
But, while two care teams may mean double the resources for medical advice, it also means I have twice the work when it comes to coordinating my care. For example, I typically alternate between clinics for my quarterly check-ups so that each CF doctor sees me approximately every six months instead of every three. And beyond my CF clinic appointments, I have many other care teams and providers who need to be kept up to speed as well -- a primary care internist, a high-risk obstetrician-gynecologist (OB-GYN), a reproductive endocrinologist, an orthopedist, and a psychologist. In the age of electronic health records, information sharing across care teams is easier than it used to be, though certainly not foolproof. Every so often, I'll learn that a medical information release authorization needs renewing, which reminds me that I need to proactively share information across my care teams.
Certainly, there are times after a particularly helpful appointment with one clinic or when certain records appear not to have made it from one doctor to the other that I wonder if I should just choose one CF care team and let the other go. My current approach is not without occasional frustration for both me and my doctors, I'm sure.
But, I feel lucky to have two doctors whose advice I value, and at the same time, two clinics to provide a sort-of “check and balance” on my care. The first time I went to the second clinic and the doctor there agreed with the general treatment approach of my first doctor, I felt a huge sense of relief and validation that my care was on the right track.
However, my teams will occasionally offer conflicting advice. While that can be difficult to reconcile, it is also a helpful reminder that decisions about my care are ultimately mine. It is up to me as both the patient and the consumer to engage with my doctors, carefully consider their recommendations, perhaps do my own research, and decide how to proceed. I believe that engagement has made me a better, smarter patient. And at the end of the day, I know that having two CF care teams (albeit as unconventional and occasionally challenging) is a gift.
Adult with CF
Megan was diagnosed with cystic fibrosis at 4 months of age, and has been a CF patient across three different states and multiple CF care centers over the last 33 years. After graduating with a BA and MA from Stanford University, she received a Master of Public Policy degree with a certificate in health policy from Duke University. When Megan isn’t working on health policy, she enjoys dance and yoga, which have been crucial parts of her CF care routine since childhood. A California native, Megan now lives in Silver Spring, Md., with her wonderful husband, Bobby.
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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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