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.
It can be a lot to manage two children with cystic fibrosis who have other health issues. I made it work by making my children responsible for their own treatments and not sweating the small stuff when we can't be perfect.
January 8, 2021
Understudied Areas in CF Get Extra Attention at NACFC
Dancing the Frenetic Routine of a Mom to a Child with CF
Have kids, they said ... It'll be fun, they said. You find out that you are expecting and you're excited, anxious, and above all, you have to pee.
The day finally comes and you give birth to this beautiful little being, only to be told that they have cystic fibrosis, a chronic, genetic disease. And you have so many fears, so many questions, so many concerns. You read the posts on social media. And
the blogs. Do this. Don't do that. Keep them away from these everyday things. It seems impossible. But you make the appointments, and you meet the care team who will help you navigate. You learn about the meds
they need now and ones they will need in the future, so you feel prepared.
And just when you think you have this new life in order, you have another child with CF. Now the troubles have doubled. But you face it head-on and adjust the routine together. Then you get that life in order and find out your youngest also has mild cerebral
palsy. So, you make those doctors appointments. You meet the new physical therapist, occupational therapist, and speech therapist. It's a few more appointments, but you make it work. And then, another curveball -- that first child, the one who made
you a parent, the easy one -- is diagnosed with Type 1 diabetes. More doctors, more appointments, more meds, more education, more advocating. You wonder if there ever will be a real normal.
But here are a few things I have realized since having both of my beautiful CF babies. A lot of parents think doing everything for their kids makes their lives more "normal," allowing them to really be kids. They put all this pressure and guilt on themselves
that doesn't need to be there. Making your kids responsible and self-aware is a huge help. You can educate friends and family, and that's a huge help. It takes some of the pressure off you as a caregiver.
But educate your kids. It allows them the independence needed to visit friends, have sleepovers, go play games, live their best life.
We may all live with it, but it is their disease. I know I can't be everywhere, and don't feel I should be. I believe our family is a team. And teamwork makes the dream work, folks. That responsibility has led us to get pets. Lots of
Life is a balancing act. I know it sounds cliché, but it is. The ability to balance everyday "normal' life and meds, treatments, and doctors appointments seems like a never-ending battle. And sometimes
it is. But I am a big believer in my kids' quality of life as well. So, if they are healthy and we are at the lake, an amusement park, or the beach, and we need to miss a treatment, it is OK.
No day is going to be perfect either; so if we don't have enough enzymes, or vitamins,
or PediaSure, then we will get it tomorrow. And try to remember better for the next time.
If we don't know the exact carb counts for what my oldest is eating, we will Google it to get as close an idea as possible and fix it later.
I'm lucky to have great kids who know what is expected of them, and in every situation do their best to do so. Granted, they test me daily. But they have been through many doctors, medications, surgeries, treatments, admissions, and overall tests of will
and have come out on top. I asked them what they would change about their lives. My oldest would have an endless supply of books ... and another dog. My youngest would have every gaming system ever made ... and a scorpion.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of two children with CF
Desiree has two kids living with CF, one who is T1 diabetic and another with mild cerebral palsy. Both held accountable for their own care. I can’t be everywhere, so all I can do is educate them and give them the best quality of life possible.
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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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