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 a parent of two kids, I find myself wondering if Anna's CF is changing Jack. Would he feel the same responsibility for her if she didn't have CF?
September 3, 2015
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Parenting is not an easy job. It carries a tremendous amount of pressure and responsibility. Every parent will face challenges in some way or another. But as CF parents, we face a unique set of challenges that are complicated, at times overwhelming, and constantly changing.
I am the proud parent of two beautiful kids. Having more than one child always changes the dynamic in a family, and adds more to the list of worries. Am I giving them both equal time? Am I fostering a good relationship between them? Am I making them both feel as loved as possible? Along with these initial worries came quite a few more when Anna was diagnosed with CF through her newborn screening.
The phone call from our pediatrician was the first time we heard of cystic fibrosis. We were holding our one week old baby girl and trying to absorb what we were being told. Jack was two at the time, and we quickly had him sweat-tested as well; his came back negative.
The pride is in how we handled it. I went into full-on problem solving mom-mode. I didn't take any time to emotionally process her diagnosis. My main focus became getting her nutrition on track. I got her enzymes as soon as possible, did as much research as I could and nursed her on demand. I became totally zeroed in on getting her to grow.
I am proud of how my instinct to care for my child overcame my instinct to fall apart.
But I am sad because I can say with certainty that I missed a lot of both kids' lives that summer in a flurry of new information, worry and determination. This was the beginning of parenting two kids, one with CF and one without.
We've had talks about cystic fibrosis. Both of them know what it is and what it means to have it. They understand that it's serious, and they both take Anna's care seriously. However, while they both know that Anna is unique and needs more medical attention, I also try to make sure that Jack knows he is just as important. I caught myself once extremely stressed about how sick Anna was with a cold and cough. Jack had the same cold and cough, and when my husband said something to me about it I said, “He'll be fine!'” It was true, he would be fine, and a cough and cold with Anna is a much more serious situation. But I knew I could have handled it better. I learned that even though I know that he'll be fine, I need to treat both situations with the same care and love.
For Anna, that is probably the best quality. But I worry that it's too hard for him to worry about her as much as he does. Jack is deeply empathetic by nature, so I didn't notice how much this has affected him until recently. He is always looking out for her, like I'm sure all big brothers do, but his is an added layer of responsibility.
I hear him reminding her to wash her hands, explaining to her about germs, encouraging her to drink water on the beach or at the pool. Just the other day they were playing out back and I heard him yell for me. I ran out thinking something terrible had happened, but he just had his hands out pushing Anna back, and said, “Mom, you have to dump the fire pit because of germs. I'm keeping Anna back.” He was concerned because it had rained and there was a pool of stagnant water in the pit, and he knew that was a dangerous thing for Anna to touch. I was so impressed with him and incredibly proud, but heartbroken at the same time.
I wonder all the time if this is just who he is, or if it is deepened by her cystic fibrosis.
My challenge right now as a parent is to try to understand Jack and let him be the empathetic and loving person he is, while at the same time trying to reassure him and reduce his worry.
A positive is that both of my children have learned compassion at an early age. They understand differences by understanding each other. Jack doesn't have cystic fibrosis and Anna does; they were born that way. Therefore, anyone can be born any sort of way. They understand that everyone is different, and it just makes you unique — and being unique is awesome.
Mother of a child with CF
Kate is married to her high school sweetheart Alexander and is raising their two children, Jack and Anna, in Pennsylvania. Anna was diagnosed with CF shortly after her birth. An English major at Penn State University, Kate decided to use her passion for writing to inform others about CF, keep everyone updated on her family and fundraise for the cause on her blog SisterFibrosis.
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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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