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 the mother of two girls with cystic fibrosis, the time-consuming routine can wear down on you and cause frustration. Although CF can be challenging, it's important that I keep my attitude toward the disease in check because I know it will ultimately shape how my kids approach their lives with CF.
Kimberly Houston, MSN, BSN, CPNP-PC
September 26, 2017
What’s the CF Community Up To?
3 Tips for Combatting Aches, Pains, and Posture With CF
There is a smile on my face, but a burden in my heart so big I could scream. Today, it isn't sadness or fear. It's just the burden of cystic fibrosis -- a disease that never goes away and affects both of my children. It is a hurt only I can feel, but
no one else can see. Especially my two girls.
This disease -- the time it takes, the way it hinders the normal flow of life, the monotony and constancy of it all -- just feels so irritating at times. I go about the day-to-day routine, taking care of my girls, chasing after housework, running errands,
managing behavior, picking up toys, cooking meals, doling out hugs and kisses, serving snacks, giving baths, and telling stories. Then, there is chest physiotherapy (PT) -- that nuisance of a machine I have to make them sit down for twice a day --
and those awful, yet life-saving, enzyme pills they must take every time they eat.
I get so tired of seeing them, yet I know they are absolutely vital, so I would never even consider being anything but compliant. Yes, there are days when I scream and curse at them inside my head and want to THROW THEM AT THE WALL. (I feel both guilty
and completely justified to admit that.) But instead, I smile, giggle, and try to make it fun. I suppress my bitterness toward this incessant part of our routine and keep calm because my children are watching me. Even if I think they aren't, they
are always watching and always learning from me how they should approach this life and deal with the hard things that are thrown at them.
I feel a huge responsibility to help shape the way my girls think about their lives with CF, which means I have to constantly be aware of my own attitude and emotions toward the disease -- even when I am in the most inconvenient of places, digging through
my mom bag, fumbling over prescription bottles, and trying to find to find a level surface to open and pour capsules into a spoon of applesauce for one impatient toddler while pulling out more pills and finding a drink for the other as both kids are
begging me to eat. Yes, even then, I have to hold my tongue and make it look like no big deal. It isn't always easy, let me tell you. But sometimes, you just have to keep on moving no matter what. No one needs to see how irritated you feel inside.
My children already have to bear the major burden of this disease. But, they do not need to be taught to go about it with anger and negativity. And whether I express my thoughts out loud or not, my behavior is most definitely teaching them how to feel
about it, even now at such a young age. Having a bad attitude and airing out my frustrations for my kids to see is not healthy or appropriate, as it's not how I want them to approach the disease in their own lives. Instead, I want them to remain carefree
and happy for as long as life will allow. So, I am not going to plant seeds of bitterness and sadness in their hearts by showing them how much I hate these pills or dread setting up chest PT every day.
As my two girls get older and express their own frustrations over their rigorous CF care routine, I will empathize with them and give them the freedom to get mad about it from time to time. However, I will teach them that although there are some things
in life you just can't control, you can control how you respond to them. It is natural to get mad about the things that are hard and burdensome in your life, but those negative feelings need to be short-lived. I want them to be able to move on and
divert their attention to the good things around them instead. And as a mom, whether you like what you are doing or not, just try to smile and find some fun in it when you can. Because while it might not always be easy, this life is still pretty amazing.
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. 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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