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 pharmacist, I've received many questions about complementary and alternative medications and supplements over the years. Although I am admittedly not the first person to “jump at the idea,” I always make sure to stay informed about available products and listen to my patients without judgement so that we can partner together to develop the best treatment plans for them.
Hanna Phan, PharmD, FCCP, FPPAG
March 18, 2019
My 5 Takeaways From ResearchCon
The 3 Words I Want Every Single Hospital Employee to Hear
Many think that pharmacists “love medications” and believe they are the only way to treat ailments. In reality, many pharmacists, like myself, try to improve treatment so that it is safer and more effective and, whenever possible, minimize what is commonly called “polypharmacy” (using more than one medication or therapy for a given sign, symptom, or indication).
Although clinical care guidelines provide recommendations that are both expert- and evidence-based, I believe that, in the end, no two people are the same. Therefore, their therapy may not necessarily be the same either. Treatment should be individualized to each person, with evidence-based care as the framework. That's why I truly believe that any treatment plan should be made in partnership with the cystic fibrosis care team and each person with CF. As care team members, we often ask SO MUCH of our patients in terms of the number and frequency of prescribed medications. We sometimes fail to take a step back and think about what we are really asking of them.
For example, over the years, I have gotten an increasing number of questions about complementary and alternative medicines and/or supplements. This led me to do my own “investigative work” and self-reflection on this category of treatment.
When I first began looking into this, my initial reaction was, admittedly, a negative one. As a clinician, the unknowns scared me -- the unknown potential interactions with current medications, the unknown effects on organ function (e.g., kidneys, liver), the unknown safety implications, and the lack of information to help guide clinical decision-making about these therapies. I failed to really recognize WHY my patients and families were turning to these treatments.
And so, I took a step back and thought about: a) Why these may be of interest to my patients and families, and b) What could happen if I allowed my fear of the unknown to take over my approach to care (i.e., how would this kind of negative reaction affect the relationship I have with my patients and families? If I come off completely closed-minded about this, will my patients and families tell me if/when they are using them?)
What I have ultimately come to find is that there is much yet to be learned about complementary and alternative medicine or supplements.
This includes how they may (or may not) work in the body, their short- and long-term effects, how they interact with traditional medications, what an effective dose is, or how it should be formulated.
I have also found the way that certain products are marketed can sometimes cause misunderstanding, which is why it is necessary to go beyond what is stated on a product website. For example, a supplement is technically allowed to say that it “promotes” a certain aspect of health (e.g., lung health or function) on the label. But, “promoting” is not equivalent to “treating” a given condition -- a distinction that may not be clear to everyone.
Additionally, many people don't know that some complementary and alternative medicines or supplements affect or undergo processing by the liver -- and, so do CFTR modulators. Therefore, we aren't certain about the outcomes of combining them as part of daily care.
As a pharmacist, I am responsible for providing safe and effective treatment to my patients. For me, this means considering the use of complementary and alternative medicines or supplements alongside traditional medications used in the daily care of CF. I always try to stay as informed as possible about the data behind complementary and alternative medicines and then share this information with my patients and families.
At the same time, we as CF care team members should be open to the possibility that someone may decide to use a complementary or alternative medication or supplement, even though it may not necessarily be recommended clinically. In these cases, I feel that it is important to partner with patients and families in developing a treatment approach that includes a plan for monitoring for both efficacy (i.e., trying something for X months and seeing if it affects how you feel, lung function, symptoms, etc.) AND safety (i.e., drawing blood at given time points to check labs for effects on the body, including kidney and liver function).
Now, admittedly, when it comes to complementary and alternative medicines or supplements, I am not the first to say, “Yes, go ahead and use it!” However, I try to be the first to say, “Let's talk about it, together -- the good and the bad, what possible effects we should look for, and what we should monitor to be as safe as possible.”
One of the most important things I have learned is that approaches to care, whether traditional medicine or alternative treatments, should be an open dialogue between people with CF, their families, and their CF care team.
I want my patients and families to feel that they can talk with me about what they are considering or are using without fear of judgement or disappointment. Your voice and what you value in your treatment and health is important. So, “Let's talk about it, together.”
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Hanna Phan, PharmD, FCCP, FPPAG
CF Clinical Pharmacy Specialist
Hanna is a clinical pharmacy specialist at Banner University Medical Center-Tucson and associate professor for the Colleges of Pharmacy and Medicine at the University of Arizona. She has been with the Tucson CF Center since 2008, working with children, their families, and adults with CF in both outpatient and inpatient care settings. When not in clinical practice, Hanna exercises her creative side through amateur photography. Passionate about the coproduction of CF care, her practice and research interests have focused on medication use as part of sustaining daily care and patient and caregiver engagement. She also enjoys partnering with the CF community through serving on the CF Foundation Education Committee and Success with Therapies Research Consortium.
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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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