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 our daughter was born with cystic fibrosis, we knew that our older son's brotherly duties would be more complex than we had originally anticipated. But, as our family has grown, I have complete faith that while their needs may be different, the love we give these two amazing children will always be the same.
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In my heart, I knew Coggin would be an amazing brother. I believed it deeply and contemplated it for years. And then last year, when we found out his sister had cystic fibrosis, I held strong to that belief, as we began learning how to balance two children with similar yet very different needs.
Kaehler was born in December 2016, and from the moment I met her, I knew she was meant for us. At that time, Coggin was 7 and immediately took to big brother responsibilities -- helping with bottles, playing “gofer” for diapering supplies, and snuggling near her any chance he could get.
When we found out a few weeks later that Kaehler was born with cystic fibrosis, our brains were suddenly consumed with the many responsibilities that came with her newly recognized needs.
It wouldn't take long to realize, though, that my husband and I wouldn't be managing them alone. Coggin's hands and heart would be a huge part of our new routine.
While it's certainly not his regular responsibility, Coggin knows how to give Kaehler her enzymes before meals and thinks it's fantastic that we always have applesauce on hand. He is unfazed by my collection of baby spoons, remembers which medicines she gets at which times, and knows exactly where the extra stash of enzymes is in the bottom of the diaper bag (and cupboard and various other places).
We began integrating Coggin into treatments early and, initially, for his benefit. We let him put medicines into the nebulizer cup or hold the neb gently to Kaehler's face. Then, as she grew older and treatment time became more difficult for her to sit through, it became clear that Coggin was pivotal to our success. After all, what little sister can resist the entertainment of her 8-year-old brother for 30 minutes?
Kaehler recently started vest therapy, and Coggin was the first to offer to help. The hoses connect to her vest in the same way hoses connect to equipment on our farm, which of course means he's a pro. He has been to clinic with us and met our dynamic CF care team.
But, cystic fibrosis isn't the only thing on our daily schedules. Like any hard-working 30-somethings with two kids, we do our best to make one-on-one time and have play time as much as possible.
To this point, we have been fortunate enough to feel confident taking Kaehler along to do all of the usual things we used to do with Coggin as a family of three. We still go on vacations, enjoy visiting new places, and make an annual trip to watch the rodeo. We just happen to take extra precaution -- and plan a little more thoroughly -- these days. We also make sure each child gets one-on-one time. Whether it's time with dad on the farm or a Starbucks date with mom, we balance our boy and girl the way I assume any family might.
That's not to say we haven't had our share of flailing and failing since cystic fibrosis entered our lives 12 months ago. It has, after all, been the most challenging 12 months of my life.
And yet, I still have that same deep belief Coggin was born to be a big brother. I still have that same deep belief Kaehler was meant for us. And, I have complete faith that while their needs may be different, the love we give these two amazing children will always be the same.
Mother of a child with CF
Kate is a small-town writer, farmer’s wife, and mother of two. Her daughter, Kaehler, was born with cystic fibrosis. Kate earned a Bachelor of Arts in English from the University of Illinois and a Master of Fine Arts in fashion journalism from Academy of Art University. In addition to writing, Kate works full time at a local financial institution managing correspondent operations. In her spare time, she enjoys running, yoga, fashion, and spending time on the farm. Follow her story at dirt+heels.com and on social media at @thisiskatej.
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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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