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 I am very involved in my son's cystic fibrosis care, I have learned to rely on the insight and expertise of his care team when mine isn't enough.
May 16, 2017
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After three years of raising a child with cystic fibrosis, some days I feel like a pro. Others, I feel like I'm back to square one. Guess what? I don't know everything, and that is finally OK.
We have a truly magical
partnership with my son's care team. Even at 3 years old, Major is the leader of the team. My husband and I don't consider ourselves to be on equal footing -- medically -- with Major's care team. But, as people who only want the best for Major, we are in lockstep.
I am a Google queen! I love to research and find the answers to all sorts of random trivia. But, when it comes to CF, I don't Google much at all. I leave the transfer of knowledge up to our care team. Rather than research something that could happen in five years, I am just fine waiting until it happens to sort it out. Sometimes this lack of “what if” research causes me to be caught off guard.
Shortly after Major was
diagnosed with CF, we found ourselves being seen weekly at his
CF care center. His weight was quite low, and with each appointment came increased
digestive enzymes. And with each increase, I grew sadder.
I remember a particular call to Major's clinic during which they increased the enzymes, yet again. I completely lost it and cried so hard on the phone. I was so sick of hearing that he needed more medicine.
Our dietitian said something to me that began to change my outlook. She told me that Major's pancreas simply does not work well, and suggested that I not look at his enzymes as medication. Rather, we have to give him something to help. Yes! To this day, I remind myself that we are always giving something to Major to help his body do what it should be able to do.
With partnerships come some tough conversations. I remember when Major was about 6 months old, he had a mild cough that wasn't going away, and he was taking everything that a 6-month-old with CF could and should be taking. His physicians felt it best to begin treating him for reactive airway disease. As soon as I heard the medication name, I sat on the floor and cried. Through my tears I asked about 11 questions; not just questions about the drug. I found myself almost arguing with Major's doctor, in total disbelief that Major could have another condition besides CF. I was just sure that it couldn't be right.
Begrudgingly, I took the prescription and filled it. After a week on the medicine, the symptoms were gone. Amazing! After about a month, I finally stopped stressing about the added drug. I realized that having cystic fibrosis doesn't make Major exempt from other health issues. And that heap on the floor I was in? That's OK, sometimes. Sometimes we need to be down on the floor, and let ourselves cry.
Major's care team spends time evaluating the big picture. They do not give Major medication that he doesn't need, and they take time to thoroughly explain why when he needs something new. And if we aren't comfortable or don't understand -- they explain it again, differently!
In every phone call, appointment, and admission, there is a partnership.
Three years into this, I'm -- dare I say it -- happy when I learn something new about Major's disease. Knowledge is powerful, and I'm grateful for a care team that knows cystic fibrosis inside and out and tells me what I need to know, when I need to know it.
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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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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