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.
When our daughter was diagnosed with cystic fibrosis, all I could think about was walking into that first CF clinic appointment and walking out with “the vest.” Although transitioning to the vest was the change I feared the most, it's been a welcome change to our once-difficult routine.
May 7, 2018
The Challenges of Sharing My Disease on Social Media
4 Stories From the CF Community
There I was: sitting in front of my computer scrolling through Facebook, tears streaming down my face as I watched a video of a small child in a vest vibrating slightly on his couch, tablet in hand. Inspirational music played in the background as information followed about the frequency of these treatments, the details of their impact, and everything this boy would endure daily in his life with cystic fibrosis.
Although I'm not sure why I remember that moment so vividly, the way I felt while watching that video -- and the thought that immediately followed -- are forever engrained in my memory: “Thank you, God, for bringing me a healthy child.”
Five years later, when our pediatrician called and told us that our new daughter, Kaehler, tested positive for cystic fibrosis in her newborn screening, all I could picture was “the vest.” It immediately made me think back to that boy. My tears. The challenges this baby girl would face.
The vest had become my own unofficial symbol of these trials, and all I could imagine was walking into our first CF clinic meeting and walking out with a vest.
I had expected it to be the visible cross she would carry for a disease that is often defined as invisible.
I cannot put into words how relieved I was when my husband and I were told that we wouldn't start with a vest and walked out of that first CF clinic appointment with a tiny pink cup to use for chest physical therapy (CPT) instead.
But then, life happened. Our girl grew and grew. We celebrated with gratitude for her continued growth and weight gain despite the challenges of CF, but we also learned quickly that our strong little girl had no intention of being held back.
The struggle to corral a toddler is real -- not to mention twice daily for 30-minute manual CPT sessions -- especially when said toddler has already been sitting still for an hour's worth of other treatments. As Kaehler closed in on her first birthday, CPT had become the hardest part of our day.
In December, Kaehler finally measured big enough for a vest at clinic. Our respiratory therapist walked us through how to use it. She explained the parts and pieces, taught us how to hook everything up, and told us she'd place the order for us. A company representative would come out to the house and help us set up. As always, we could call her with any questions.
When she walked out of the room and closed the door, I suddenly became overwhelmed and tears rushed through me. I looked at my husband, who had tears in his own eyes. Only this time, I knew we were both thinking the same thing: We had made it. These were tears of joy.
The fight was over. No more holding her down or back. No more screaming sessions while we tried to get her in just the right position for three-minute intervals, tapping gently to keep her healthy.
Although the hoses that connect her to the compressor are only a few feet long, they are just long enough to let her stand at a play station or to sit amid her toys. We can sit with her and have a picnic while she does her vest. She plays games with her brother. She can be a normal toddler and fight the symptoms of cystic fibrosis.
With manual CPT, we had 30 minutes of actual therapy and at least 15 minutes of fighting with Kaehler between positions. Although each dedicated area only needed three minutes of attention, trying to get her into just the right position -- and then repositioning when she fought back -- added a lot of time to our therapy sessions. With the vest, Kaehler puts it on, the timer turns it off 30 minutes later, and we're moving on with the day. It also takes the stress off of us because we no longer need to worry about whether her squirming and reluctance to sit still impacts the effectiveness of our treatments.
While everyone has a different form of airway clearance that is right for them, the vest has been a welcome change to our once-difficult routine. It was also the change I had feared the most.
I had worried that moving to the vest would be an official transition into our new reality -- a physical display of our new life with cystic fibrosis. And while it's certainly not something we can hide since it takes up a large amount of space in our living room, it's also given her more time to just be a toddler.
There are so many things about having a child with cystic fibrosis that have shaken me straight to my core. I never could have imagined that the one thing shaking her would be just the stability we needed.
Mother of a child with CF
Kate is a small-town writer, farmer’s wife, and mother of two. Her daughter, Kaehler, was born with cystic fibrosis. Kate earned a Bachelor of Arts in English from the University of Illinois and a Master of Fine Arts in fashion journalism from Academy of Art University. In addition to writing, Kate works full time at a local financial institution managing correspondent operations. In her spare time, she enjoys running, yoga, fashion, and spending time on the farm. Follow her story at dirt+heels.com and on social media at @thisiskatej.
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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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