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 my husband and I were given the thumbs-up from my cystic fibrosis doctor to start trying for our own family, it felt like a small victory 12 years in the making. After being referred to a maternal-fetal medicine physician for a preconception consultation, we are finally taking our first steps toward parenthood.
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It was summer vacation; I was 13 and in-patient for a "tune up" when my pediatric cystic fibrosis doctor sat me down to have "the talk" as part of the imminent process of
transitioning into self-care and adulthood. Although we discussed other embarrassing
(at least according to a 13-year-old), I most vividly remember his explanation of pregnancy in CF. It included a bit about the importance of a planned pregnancy as a way to ensure that your health was as stable as possible before trying to conceive. His words -- used as my motivation to stay consistent with treatments and make wise decisions -- have stuck with me to this day.
Perhaps this is why when my husband and I were given the thumbs-up from my CF doctor to start trying for our own family, it felt like a small victory 12 years in the making. We were referred to a maternal-fetal medicine (MFM) physician, or high-risk obstetrician-gynecologist (OB-GYN), for a preconception consultation to gather information and receive recommendations as our first steps to parenthood.
The appointment began with a wonderful medical student taking a detailed medical history to identify any risks or issues that the physicians should be aware of. Past surgeries, acute conditions and more chronic issues, like
cystic fibrosis-related diabetes (CFRD), were documented for further discussion by the MFM resident who joined us shortly thereafter. The resident was very encouraging and said she believed that I was in a good place health-wise to become pregnant. Yay! She noted that I have good follow-up with my different specialties, consistency with
treatments and medications
and periods of stability -- all positive habits that they look for in a patient wishing to manage a pregnancy and motherhood with a complex chronic illness. My lung function, on the other hand, was "something they could work with," but I took that comment as a compliment.
Next, the MFM fellow joined us and dove into the risks and what-ifs of pregnancy in CF. Honestly, this was the slightly alarming part of the appointment. We discussed the possibility of exacerbation and lung function decline, the effects of CFRD on both mom and baby (good blood sugar control is key) and the importance of gaining weight and being proactive about
if needed. The medical jargon and worst-case scenario speeches were nothing I hadn't uncovered in my own research, but hearing them come from the physician's mouth in the cold exam room rattled me a bit. I quickly reminded myself that no two patients, especially CF patients, are the same. Our experiences and outcomes will differ, but it's best to be prepared.
Last, we turned to my long list of medications. To my surprise, most of my daily medications were safe to take while trying to conceive and during pregnancy. However, the high-dose ibuprofen taken to treat and reduce inflammation in my lungs would need to be discontinued during pregnancy. I mentally waved a sad, preemptive goodbye to my favorite medication, and the physician and I vowed to stay in contact to finalize a plan for two other potentially questionable medications.
As the appointment drew to a close, the physicians recommended an echocardiogram (ultrasound of the heart) to rule out the possibility of pulmonary hypertension and explained that this was a pretty standard test requested for patients with lung disease. They told me that a summary of all the information discussed would be shared with my CF doctor, and as a group, we would agree on a plan for moving forward.
My husband and I left the appointment feeling encouraged and reassured that our care rested in good hands, but most of all we felt very hopeful about our future. As all CF patients know, that's the absolute best feeling leaving any appointment.
Adult with CF
Janeil is a Cleveland native who was diagnosed with cystic fibrosis at the age of 4. She graduated from Case Western Reserve University with a degree in anthropology and continues to complete a master's in public health. Janeil serves on the Quality Improvement Team at her local CF clinic and enjoys sharing the daily experiences of a 20-something-year-old with CF in her lifestyle blog Flowerlungs. In her free time, she enjoys drinking coffee, arranging flowers, and spending time with her husband, cat, and family. Follow @neiljaggers on Instagram and Janeil Jaggers Whitworth on Facebook.
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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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