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 got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.
February 1, 2021
Opening Up About My CF
I Got Help for My Depression
During the current pandemic, our daughter Mara, a beautiful 24-year-old with cystic fibrosis, was living at home as she was finishing her master's thesis. We were taking the same precautions as everybody else: only going out when necessary, wearing masks,
physically distancing, and constantly washing our hands. As a CF family, we know this drill. We practice it -- ad nauseum -- every cold and flu season.
When my husband, Mike, started feeling unwell toward the end of October, we thought he was probably just tired and run down. But symptoms continued and off he went for a COVID-19 test. The test came back positive one day later and we began to plan how to minimize exposure for Mara. Our first instinct was to get Mara the heck out of the house! We thought, perhaps, she could live with her boyfriend for the next couple of weeks.
But Matt is a pharmacist, and if he was exposed to the virus by Mara, not only could he get ill himself, but he may have been unable to work. We also felt it was unfair to expose friends and family to Mara.
After much angst, we finally decided that Mara had no choice but to remain home. This unfortunate young lady was doomed to two full weeks shut in with her parents…
We are lucky enough to live in a four-bedroom house, so we had some space and the flexibility to spread out. Every family that finds themselves being compromised with COVID-19 needs to figure out how to deal with the situation on their own after considering
the layout of their homes, available space, and comfort levels, but here are the steps my family took:
Mike was tired, achy, and developed some mild respiratory symptoms, a cough and a chest heaviness. I am thankful that he was not terribly ill. Four or five days later, I started feeling rundown myself. I worried that I might have COVID-19 and wondered
what to do to protect Mara. At that point, we took these additional steps:
It was so odd to have to separate myself from Mara, as I was so very used to being her caregiver when she was sick. Now both her dad and I felt like a threat to her. It was not a comfortable feeling for sure.
At day eight of this hostage situation, Mara and I were able to obtain at-home COVID-19 “spit” tests. What a weird and icky experience. You had to sign on to a Zoom call with a provider who instructed you on how to assemble the collection vessel and then
watched as you filled it with saliva. I truly hope I never have to have someone watch me spit again. Thankfully, the results were returned to us within 24 hours and Mara and I were both negative. Yay! That news, at least, took some of the pressure
off. It then just became a waiting game.
Days 9-14 were a blur, as one day rolled into the next. Mike felt a little better every day. His cough lingered, but it was not severe and was improving. We let him roam free after day 14, but since he was still coughing, he wore his mask when he was
in common areas for a few more days and still kept himself to the master bedroom and bathroom.
Slowly -- excruciatingly slowly -- we began to rejoin the world. It would have been comforting to know when Mike was no longer shedding virus and it was safe for him to be around Mara. But no one could tell us precisely when that would be as some symptoms
-- such as cough and loss of smell -- can last for months and no one knows precisely when a person is no longer contagious. So we used common sense and intuition, and we seem to have fared well.
This experience was difficult, but we were so grateful that Mike did not get seriously ill and that Mara and I remained healthy. We also were lucky that we had the space to spread out a bit and that Mara is an adult and was not only able to understand
the crisis, but was also able to pitch in.
I could not help thinking about how much more difficult this would have been with little ones around the house. My hat is off to you home schooling parents!
It was also fortuitous that we could all work from home and did not miss work or school during our quarantine. Mike recovered, I stayed healthy, and Mara finished that Masters of Science in Public Relations! More importantly, we survived the strict isolation
without killing each other. 2020 was a tough year, but the Cray family rallied together through it all.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of two children with CF
A graduate of the University of Notre Dame, Sharon left her business career after two of her children were diagnosed with cystic fibrosis. Since then, Sharon has dedicated herself to working to find a cure for CF and to furthering the goal of patient and family centered care. Sharon has served as a parent partner to several research projects including, the Patient and Family Centered I-PASS Study. She serves on several hospital committees at St. Christopher’s Hospital for Children in Philadelphia, has coauthored several publications, and is an active volunteer with the Cystic Fibrosis Foundation.
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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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