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.
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
Kimberly Houston, MSN, BSN, CPNP-PC
September 15, 2016
Honoring Her Son and Healing Hearts: One Mother’s Story
Walking Across America for CF
Being a kid should be fun and carefree. But for children born with a chronic illness, there are many factors to threaten that joyful way of life. For a child living with cystic fibrosis, the responsibility often falls on the parents to not only manage their child's daily health needs and keep them as free from illness as possible, but also to find a way to provide them with a happy childhood that doesn't impose too many restrictions.
I am not an anxious person by nature, but when our first daughter was diagnosed with CF (followed shortly by our second daughter, who was also diagnosed with CF), my husband and I were in a state of panic. We didn't want to take her anywhere, meticulously applied hand sanitizer and felt the need to wipe down every surface she came into contact with. We were even afraid to take her outside for fear that particles in the air might harm her lungs (I'm not even kidding!).
Protecting her at all costs sounded like a loving thing to do until we considered what it may cost her. How would she view the quality of her childhood as she grew older? What would be more important to her: living longer years or living a life full of experiences with the same opportunities as her peers? We decided that giving her the best life we possibly could would require us to consider both.
Social development is undeniably a very important part of childhood, and we believe that both our girls deserve the opportunity to grow up doing all the things that other kids do despite having CF. However, this can be quite frightening for a CF parent. We know how dirty kids can get, how readily they pass germs around and what danger this poses to our children. It is vital that we limit their risk of infection, which means that there will be times when we will have to say “no” to something we would have agreed to otherwise. But at the same time, we also can't let our fears drive every decision; the answer can't always be “no.” We know that we will continually have to release some of our fears and make thoughtful and responsible decisions to limit risks, all while offering ample opportunity for social interaction and normal childhood development.
In order to keep a balance between their health and extracurricular involvement, we must take a prudent approach with careful and creative decision making. Our oldest daughter has a very outgoing personality and is involved in an array of activities including dance, soccer, T-ball, gymnastics and swim team. She has attended preschool, birthday parties, children's museums, playgrounds and amusement parks and has had countless adventures during her five wonderful years. On the larger scale, we have not held her back from anything so far, but we do have to carefully consider the complexities of her disease in most of the decisions we make. And in those moments when we feel she is being limited because of her CF, we try to come up with an alternative plan.
For example, recently, she was being treated for a cough that she had had for about six weeks. We were invited to our annual trip to the lake with family and, as much as we wanted to go, we felt that the lake water might not have been the best option at that time. So instead of going to the lake, we drove to the beach for the day.
In our attempts to prevent the girls from getting sick, we are more conscious of where we allow the girls to go when we know we have a big event coming up (like vacation, a birthday or Christmas). One week, we had to say no to a birthday party invitation after learning that another child attending had a low-grade fever and cough. Another week, that meant avoiding an indoor play space where germs are more likely to thrive and offering an outdoor park instead. Our daughter was scheduled for dance camp the week before vacation, but we decided to delay that until the week after we returned.
So, even though my oldest child is extremely involved and does not appear to be held back because of having cystic fibrosis, it isn't without a careful balancing act. I try my best to ensure that both my children stay as healthy as possible without missing out on the life in front of them or the priceless joy of just being a kid.
Kimberly Houston, MSN, BSN, CPNP-PC
Mother of two children with CF
Kimberly is the mother of two girls, Kelsie and Mackenzie, who were born with cystic fibrosis. Kimberly holds a bachelor’s and master’s degree in nursing from the University of North Carolina at Chapel Hill. She practices as a pediatric nurse practitioner in a private primary care setting, but is currently a stay-at-home mom while on extended maternity leave. She enjoys spending time with her family, traveling, outdoor adventure, photography, cooking and sports. Kimberly lives in Pittsboro, N.C., with her husband Nathan and their two daughters. Follow Kimberly on CF Mom Diaries.
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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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