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.
Looking back on my time spent in the hospital for labor, delivery, and recovery, I now understand the importance of planning and asking questions in preparation for giving birth. Here are some of the questions I wished I had asked before going into labor.
May 19, 2016
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I always knew I wanted to have children. So when I finally met my husband in my final year of graduate school at the age of 26, we did not wait long after we were married to start a family. We both understood the
impact that cystic fibrosis can have on the reproductive system and accepted infertility as a very real possibility. We worked closely with
my CF care team -- sorting through my medications to ensure that they were all “pregnancy-approved,” getting x-rays done in advance and making sure my PFTs were stable and I was healthy.
To our surprise, we got pregnant within three months. Other than a diagnosis of gestational diabetes (which is very common in pregnant women with CF), I had little to no issues throughout my pregnancy. In fact, my lung function increased during my last trimester! My CF doctor referred me to the high-risk obstetrician (OB) practice in the same medical system and hospital as my care team. It was incredibly comforting to know that if there were any issues during pregnancy, labor, delivery or recovery, I could easily reach out to my CF team and receive a quick response.
On Jan. 25, 2016, I delivered a beautiful baby boy named Jonah. My induced labor and delivery were incredibly successful, and as soon as Jonah was born I was immediately handed my nebulizers and any other medications I had missed during labor.
Doing my nebs immediately following labor and delivery.
However, looking back on my time spent in the hospital for labor, delivery and recovery, I now understand the importance of planning and asking questions in preparation for giving birth. Women with CF are a rarity in the labor, delivery and recovery units, so advocating on my own behalf became incredibly important to my post-labor recovery and care. With much of my attention focused on my newborn son, taking care of myself became secondary to my son's health and well-being. But how could I be a good mother if I was not monitoring my own health?
Although I had spent time in the hospital's inpatient CF pulmonary unit in the past, this experience gave me new insight on dealing with nursing and medical staff who may not be specifically trained in CF. Here are some of my tips for women with CF planning their own pregnancy, labor and delivery:
1. Go on the hospital tour (even if it is your CF hospital) and ask a LOT of questions! I thought I asked questions, but looking back there were so many more I should have asked, like these:
2. Maintain good communication with your OB and CF care teams throughout your pregnancy, and request that they talk to each other, if necessary. When I was diagnosed with gestational diabetes, I occasionally felt like the “middleman” between my CF doctor and my OB in managing how to treat it. I had to be firm with my doctors and request that they discuss the details together before they offered me their suggestions and recommendations.
3. If you deliver at the hospital associated with your CF clinic, find comfort in knowing that your team is nearby if there are any complications.
4. Trust that the doctors and nurses (though they may not be experts on CF) want what is best for you and your baby.
My husband and I could not be more thrilled to be on this new, exciting journey with our healthy (and CF-free) little boy! The old adage of Henry Ward Beecher is true: “We never know the love of a parent till we become parents ourselves.”
Me, Jonah, Matt and our dog Gordy smiling for our first family photo in our new home.
Adult with CF
Anna was diagnosed with cystic fibrosis at 7 months, and credits her good health to her supportive family. Anna received her master’s degree in music therapy from Appalachian State University. She is now a board-certified music therapist practicing at an inpatient psychiatric hospital. Anna enjoys spending time with her husband and her son Jonah. She looks forward to many more exciting years to come.
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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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