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.
Although we may have had nine months to prepare, getting our daughter's cystic fibrosis diagnosis before she was born came with a unique set of challenges.
March 15, 2017
Your Pain Is Not Like Mine
Understanding the Differences in Survival Between Canadians and Americans With CF
My journey with cystic fibrosis began when I was pregnant, with my doctor telling my husband and me that we each carry a
gene for a disease called cystic fibrosis. We were floored. “Where did this come from?” we wondered. Nothing in our families' health histories would have alluded to this.
My husband and I had suddenly gone from being excited first-time parents to utterly distressed about the possibility of our baby having a disease we knew nothing about.
Once we learned that we were
CF carriers, the next step for us was to get an amniocentesis (amnio) to find out if our newfound concerns about having a baby with CF were valid. The procedure was painful, but getting a positive
CF diagnosis was even worse.
Those next few days were a blur, but I remember how we each struggled through our own grieving process. Our mourning took different paths and often resulted in small arguments. My husband battled his sorrow a bit longer than I did, and I would get frustrated that we weren't moving forward at the same pace. Blame it on those “happy pregnant hormones” or the fact that I felt my baby moving inside me every day, but I was ready to move on to acceptance sooner than he was.
While we struggled, our pain slowly turned into our mission. It started with a letter that my grandmother wrote me. She said we were "blessed to be chosen to care for this special baby.” Blessed?! This seemed like a punishment. She also said that we were strong, but I could barely believe her. At that time, we had to reach outside of ourselves to find any strength at all.
So, we connected with our church and attended a meeting at our
local Cystic Fibrosis Foundation chapter, where we experienced our first rays of light, support, and hope. Then, we spoke to a pulmonologist, who is now my daughter's primary CF doctor. She gave us a more medical view of all that the disease entails and calmed our nerves by explaining away some of the scary things we were finding through our online research. It wasn't long before we were put into contact with a family whose son has CF. These parents provided a much-needed human touch and actually repeated those same words that my grandmother had said in her letter.
After an ultrasound showed that our baby had a severe bowel blockage (or Meconium Ileus), we met with a neonatal surgeon who told us that she would require surgery after she was born. At the end of this meeting, the surgeon looked at me and said, “Congratulations, by the way. You're going to have a baby!”
And then, I cried like one.
As we steadily got to the point where we were enthusiastic about our new life path, there seemed to be so much that I still needed to discover about first-time motherhood and
raising this special child. But soon enough, our baby was born. After they whisked her away to the neonatal intensive care unit (NICU), my husband and I cried in my recovery room with her surgery looming in our minds. We hadn't named her yet, but there was one name that we were leaning toward. The deciding factor was discovering that the name meant “beautiful breath of life,” and we knew there could not be a more fitting title for a beautiful little girl with cystic fibrosis.
Our little Avalyn Rose was in the NICU for 62 days recovering from two Meconium Ileus surgeries, which were performed by the surgeon we had met with a month prior. She is now 18 months old and thriving.
CF is scary. It presents daily challenges and an unsure future, but I honestly wouldn't change this life for anything. It has pushed me to be a better mother than I ever thought I could be, and has given me an outlet to connect and share what I've learned with other parents of kids with CF. Our family has been blessed with a little fighter, and I am truly lucky to be her mother.
Mother of a child with CF
Brittany and her family live in San Diego, California. She is the stay-at-home mom of an 18-month-old with cystic fibrosis. Brittany spends her spare time blogging and sharing tips and recipes she's discovering through her website. She actively fundraises for the Cystic Fibrosis Foundation and loves to speak to various groups in their honor. Brittany enjoys cooking, reading, crafting, and hiking. You can find her on Facebook or email her at email@example.com.
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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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