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.
As an adult with cystic fibrosis, I am used to being the patient and having someone take care of me. However, the roles were reversed when my then-fiancé needed surgery. Striking a balance between taking care of him and myself was difficult but necessary.
December 16, 2019
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Having cystic fibrosis and experiencing quality care as a patient has made me feel confident in my ability to provide quality care for another person. I heard someone say once that CF patients are more sensitive to other people's needs because we're always having to monitor ourselves. And that vigilance can carry over into other parts of life, like when you switch from being the one who needs the care to becoming the one who provides the care.
The caregiver switch happened when my fiancé, now husband, had open heart surgery. It all came about rather suddenly, but we did have time to prepare plans for how he'd be cared for once he came home and was recovering from such an extensive surgery.
Something that I struggled with, and had to accept, was that I wouldn't be able to be the caregiver in the traditional sense.
I couldn't be there for him in the ways he had been there for me so many times before. It was a difficult truth for me to accept.
To deal with this reality, we set a plan in place. Our best friends would be with us in the intensive care unit (ICU) waiting room and one of their jobs was to make sure I took care of myself. Although I am an incredibly compliant patient, when it comes to stressful situations, it is human nature to forget to eat, drink water, or do that mid-afternoon treatment. Our minds are elsewhere, and we need help to stay on top of everything, especially when our own health is at stake.
Once my fiancé was out of the ICU, I had to go home to rest, which is something we agreed upon when we learned of his surgery. Because he would spend four to five more days in the hospital, we spoke with friends in the area, and they happily checked in on him every day. In addition to the ICU group and the daily visitor group, we also had a couple of people from our church who drove him to and from his appointments that were three hours away from home. And once he got home, we also scheduled sitters to stay with him when his brother -- and roommate -- was at work.
Having to prioritize my health, while still having the desire to be available to my fiancé, meant that I had to accept I couldn't do everything.
Surrendering parts of caregiving to others was hard, but it was a decision that had to be made -- not only for my health, but for his health, as well.
Although, I couldn't be the caregiver I wanted so desperately to be, there were things I was able to do. Due to my comfort levels in hospitals and with medical staff, I was able to be his advocate when we weren't familiar with terms, plans, etc. Because of my decades-long history of organizing and timing my own medications to near perfection, I was able to do the same for him. A man who never took medicine before in his adult life beyond an occasional Advil, now had a medicine cabinet filled to the brim with incomprehensible medical terms and overwhelming instructions; but they made sense to me. And although keeping all his medications straight wasn't caregiving in the traditional sense, it was still caregiving.
We have to remember that just like we can't go through the valleys and hills of this illness alone, we can't approach difficult moments in life alone either. To provide care for the ones we love, let's look to our strengths, acknowledge our weaknesses, and ask people to fill in the gaps.
People want to help. We need to be brave enough to ask for that help. And that is how we can be caregivers too.
Adult with CF
Katelyn was diagnosed with CF at 6 weeks of age. A graduate of Abilene Christian University, she has a bachelor's and master's degree in Psychology and was an analyst for a large hospital before she had to quit her job due to her health. Katelyn has participated in Great Strides and was on an adult CF panel associated with Cook Children's Medical Center. She lives in Texas with her husband. You can follow her on Instagram @kate.e.mills.
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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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