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.
I felt badly when my son Major was diagnosed with CF, until I realized it was his fight.
September 22, 2016
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I've always had this saying, “Everyone has their one thing.” Something hard in their life. Divorce, the death of a parent, an illness.
From a young age, I knew that my hard thing was that my dad was a bit older than most, and he faced lots of health issues. Many people told me I was strong. They said they were sad for what I was going through. My response was the same every time. “Everyone has their one thing. Don't worry about it.”
I would actually go so far as to hold my hand up as if to say “stop” while I smiled and repeated my mantra again and again. I knew, with certainty, that my father's health was my hard thing to deal with. And that alone I could handle.
My dad and I had great times together. We loved baseball games and fishing. An athlete I am not, but I loved to wear my toy glove and watch a game with him. Losing him was awful. He was sick for a long time, but when it was over, I knew we'd made it through the worst.
A few years after his death, my husband and I had a child, Major. When it started to become apparent that Major might have cystic fibrosis, I knew deep down in my heart that it wasn't possible. I'd already had my one hard thing in my life, so I was maxed out. Yes, I am a millennial. Can you tell? I knew in the bottom of my heart that two really big, bad things couldn't possibly happen to me.
Do you see where this is going? I'm blogging here on the Cystic Fibrosis Foundation website, so you guessed it, I was handed another hard thing to deal with. Except … I wasn't.
I was so mad about Major's
diagnosis. It wasn't fair! It wasn't fair to him or to me. I'd already endured such heartache in my life. How could my son have a genetic disease and such a cruel one, at that?
As the fog lifted, I began to see something. It wasn't without prayer and patience, but I could see that CF wasn't another hard thing for me to deal with.
It was Major's hard thing.
Looking back on my life, I could finally see that although my father's illness was the biggest hard thing I'd worked through, it wasn't the only one. Other trying times had passed. And no one was keeping score as to how many tough obstacles I was dealing with. Life is hard. Good things happen, and tough things happen.
Cystic fibrosis is Major's disease. It is the first of many hard things that he will have to deal with. That doesn't mean it isn't hard for me and that I'm not part of it. But I'm not the owner, and no one is paying attention to how many things I've had to go through, nor will they tally up Major's. This is life.
My role is to lead him through this journey until he is ready to lead me. Even at 2, he is the leader of his
care team. He can't speak in sentences, but all decisions are made based on what is best for him, not me. Like the baseball teams my dad and I used to watch, each care team member comes out of the dugout to care for him when they deem it appropriate. Soon enough, I will be looking at Major to answer his doctor's questions and he will call us onto the field.
Life won't wait until Major is done with CF before throwing him another curveball. Just like everyone else, he will learn to deal with hardships and heartache -- sometimes both simultaneously. He will also learn that there is more joy than sorrow here, and that he will have to choose how to deal with what life throws at him.
Rather than putting his hand up to say “stop” when adversity appears, he can smile and know that his momma told him it would come, put his glove on and be ready to catch that ball.
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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