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.
One of the most important things I have had to do as a parent is to teach my kids how to navigate life with a parent who has cystic fibrosis.
November 29, 2018
Facing My Fears About Transitioning to an Adult Care Team
Getting By With a Little Help From My Friends
There are two things that I know with all certainty to be true. One, I will go to the ends of the earth for my two children, and two, cystic fibrosis has been, and will always be, a lifelong battle for me. The combination of the two requires a constant
state of juggling, and trying to find the balance isn't always easy. In fact, it is incredibly challenging. They are two aspects of my life where there aren't any breaks.
The role of being a mom is one that means the world to me, and it enriches my life more than I could have ever dreamed. The role of being someone with cystic fibrosis is one that takes daily effort on my part -- mentally and physically. I know that skipping treatments for any reason will only hurt me in the long run, and I want to be around for the long run. I explain this need of daily upkeep to my kids, so that they understand why it's so important that I do all that it takes to keep myself as healthy as I can.
Ever since I was little, I knew that I wanted to be a mom. Having CF made me want to have my kids at a young age. I knew that the older I got, the harder it would become living with this disease. I had my son when I was 24 years old and my daughter at
27. My lung function was in the 70-percent range and I felt good. My only complication during each pregnancy was gestational diabetes due to CF. The days that they each came into the world will always be the most beautiful moments of my life.
My kids are 7 and 10 now, which means they are fully aware of the struggles and complications that CF causes every single day as my lungs deteriorate. They have witnessed some very scary situations. They have seen me cough up blood, and have coughing attacks that leave me gasping for air. They've seen me in debilitating pain where I can barely say a word. They have been with me during middle-of-the-night
emergency room visits -- when we've had no choice but to take them along -- hair messy from interrupted dreams, with scared, sleepy eyes. They've seen me in the hospital, attached to my IV pole when they've visited during my long admissions. They
see the enzymes I take every time I eat for digestion, the glucose testing for CF-related diabetes, the four hours a day of breathing treatments and airway clearance,
and all of my home IV antibiotic infusions through the port in my chest. I try to include and
involve them in the day-to-day maintenance of cystic fibrosis, so that they have an understanding of this disease and how it affects my life -- and theirs.
This sometimes means not being able to do things with them. CF takes me away from them in many ways, so I try my hardest to bring them to me when I can't go to them. I get up early to get my breathing treatments done so that I can take them to school,
and I help them with their homework while infusing my antibiotics. One of my biggest fears is that my struggles will make them grow up too fast. They worry about me and look out for me, even when I tell them that it's my job to worry about them.
I think it's important to keep my kids informed, so that they are less afraid, and that approach has been beneficial for them. While they do, of course, have their own fears, they generally are knowledgeable and insightful when it comes to my disease.
They have met my doctor, so that they understand who she is and that she helps their mom. I've shown them exactly how I administer my meds at home -- from start to finish -- so that
they understand the process. We FaceTime at night while I'm admitted in the hospital and away from them for lengthy periods of time, and we blow hospital gloves into hand balloons to keep them entertained in the cramped room. I try to find the silver
lining that current technology allows for me to still see them.
They have asked me some very tough questions, ones that no parent wants their child to worry about. Questions about death and what will happen if I die. Those questions pierce my heart, but I try to be open and honest with them. I tell them that anything
can happen to anyone at any time, so it's important to appreciate what we have, while we have it.
CF has always made me view life a certain way -- to be present and not take anything for granted, to love my family and friends endlessly. I try each day to teach my children the same. I wish that this wasn't their reality, but my transparency has helped
them navigate these uncertain waters. I believe that my struggles have helped shape who they are, to be compassionate and caring, which is really all that I would hope for. They are what keep me going, to fight my battle each and every day.
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Mother with CF
Lauren was diagnosed with cystic fibrosis at 2 weeks old. She loves adventuring with her family, traveling, music, writing, cooking, and has loved fashion since she was 2 years old. A former clothing designer, Lauren recently wrote and illustrated her
first book, which will be published soon. Born and raised in Las Vegas, Lauren now lives in Malibu, Calif., with her fiancé and two children, Luca and Ruby. You can follow Lauren on Instagram @ahippiesdaughter.
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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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