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.
After years of preparing my body and ensuring stability, I am excited to announce that we are pregnant! I am thankful because I believe my hard work has played a role in our success and our immense joy right now.
April 27, 2017
Adjusting to the New Me After Being Diagnosed With CF at 50
I’m a Fire Chief, Paramedic, Army Combat Medic, and Student … and I Have CF
In my experience, it's hard to deny that
living with cystic fibrosis makes things pretty tough every once in a while. But, I also know that there are moments that feel so much sweeter and more rewarding because of the influence of this disease. Finding out my husband and I are
pregnant with our first baby this past winter is an example of one of those wonderful, amplified events. I still can't believe it -- we are truly pregnant and awaiting the arrival of our little joy due in September!
The minute that test turned positive, the
questions that we had addressed before I was pregnant suddenly became much more pressing. Questions like: Will pregnancy cause me to decline? How will I manage the demands of
being a mom while also caring for myself? Will my coughing bother the baby? Will I ever stop smiling? Will we find the right home to purchase? Am I
eating enough calories? Can I eat sushi? Oh man, I really want sushi! The constant stream of inquiries was endless and, admittedly, sometimes ridiculous, but we got the hang of it eventually.
I had prepared myself mentally for feeling quite rubbish during pregnancy -- especially during that dreaded first trimester. Much to my surprise, however, I felt energized, gained an appropriate amount of weight, and even increased my lung function during those first 13 weeks and beyond. There did come a point where I wanted to throw my glucometer against the wall after days of wacky, uncontrolled blood sugars, but with a little patience and adjusting my insulin dosage, everything fell back on track. Thankfully, I started to gain confidence in my ability to be a healthy mom-to-be with CF, while knowing that I still have a long road ahead of me.
To keep myself calm and sensible during this exciting time (all new moms know every little twinge is filled with anxiety), I try to remember the following advice:
Although not every pregnancy with CF will be similar, some women have a harder time than others. I am deeply encouraged that mine has gone smoothly so far. I am grateful for
the time I devoted to preparing my body and ensuring stability because I believe those efforts played a role in our success and our immense joy right now.
We are excited for all the change and love that's coming our way. Only four more months to go before we meet our sweet reward and he or she joins us in this crazy life with cystic fibrosis!
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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