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.
I've found an airway clearance routine that works for me by relying on knowledge of my body and breath control, combining conventional airway clearance with yoga breathing techniques.
Elaine K. Malik
March 16, 2020
VLC Celebrates the Victories Made in the Fight Against CF
Adapting to an Online Volunteer Leadership Conference
In the past decade or so, I've learned that when people in the CF community find out I'm an opera singer, or that I don't use a vest as an airway clearance technique (ACT), they often assume that I must have a “mild” form of CF.
On paper, my CF should be just as deadly or disabling as others' -- I have the most common CF mutation (F508del) and I'm in my third decade with Pseudomonas aeruginosa colonized in my lungs. So, in all honesty, when someone tells me that I must just be “lucky to have a mild case,” my initial response is to get a little bit angry . . . it seems like they're discounting all the work I do to stay healthy, and it feels really dismissive of the effort that I put in.
More recently, however, I've come to understand that when someone assumes that my CF is “mild” by nature based on what they see from the outside, it's not that they're being dismissive of me. It's just that they don't actually know that airway clearance CAN happen effectively without a vest, because they haven't experienced it.
It's not that I don't need airway clearance -- I definitely, absolutely do -- it's just that I use methods that rely much more on my own internal awareness and breath control, and less on external devices.
As a professional singer I've cultivated strong breath control, and as a registered yoga teacher I've been trained in many yoga pranayama breathing methods (pranayama). So, for me, it's only natural to use breath-based airway clearance methods -- particularly autogenic drainage, which is lesser known in the U.S. but very common overseas.
As I've been teaching yoga to people with CF all over the world for the past few years through CF Yogi and Beam, I've learned that many people in the U.S. don't even know that there are other valid airway clearance options and alternatives to a vest. Last fall I led a panel on airway clearance options at BreatheCon with Pamela Scarborough at Beam, a CF physiotherapist and yoga teacher from the U.K. who has used yoga in her clinical practice. The response was so overwhelmingly positive that CF Yogi recently collaborated with Beam on a class, Yoga for Airway Clearance, for people with CF.
For me, ACTs are most effective when they bring me into in the moment, fully present in what I'm doing and feeling in my lungs. Huff coughs, autogenic drainage, pranayama, oscillating positive expiratory pressure (PEP), and even singing have been my magic mix. I bring my awareness to what I'm feeling, and tailor my ACTs to respond to those sensations in the moment.
I've practiced my ACTs enough that now I can target my breathing and my movement to clearing specific areas of my lungs based on what I feel and hear when I breathe. The sensation of feeling what's happening inside is very important to making my ACTs effective, which is why I prefer not to use a vest. The drone of a vest makes me mentally tune out, and the vibration masks any subtle signals that I may be getting from my lungs.
When I need some external assistance, I like oscillating PEP better because the oscillation helps to shake things loose, but the sound isn't nearly as grating. And as a bonus, my breath-based airway clearance habits mean that I can travel anywhere without lugging around heavy equipment. My inhaler and oscillating PEP device are everything I need.
To be clear, it's not that external devices are bad -- I know that many people use them and love them -- they've just never really been all that helpful for me, personally. To me they make airway clearance feel more passive, and I just don't get the focused and active engagement from using them that really makes for productive clearance.
But, the past few months have thrown me for a loop. After a couple of months on Trikafta™, I found that the techniques that I'd always done for airway clearance were no longer working like they used to. For a while I couldn't tell whether it was because there was nothing to cough out anymore, or what. But when I started feeling noisy crackles in my lungs about six weeks in, I knew that indicated something was there that needed to get out.
I tried every airway clearance technique I knew. I tried a bunch of different settings on my vest, did autogenic drainage, huff coughs, PEP, exercise, singing, yoga, playing my tin whistle ... you name it, I tried it. The fluid dynamics in my lungs just felt DIFFERENT, and I couldn't tell how to get the junk out.
My home spirometer began to show a drop back to where my numbers were pre-Trikafta, so I started a two-week course of antibiotics, and was frustrated when -- after a week -- I felt no change.
But then, I had a brain wave. I realized there were some pranayama breathing methods that I knew about but had never really practiced before, because they'd always felt out of reach. My brief attempts hadn't gone well when I first tried them years ago, so I had mentally written them off as not available to me.
So with my new less-sticky Trikafta lungs, I thought I'd give them another shot. I started experimenting with yoga pranayamas and techniques like breath of fire, uddiyana bandha, and a deep relaxation breath. And they WORKED!
I began integrating these Eastern breath practices (yoga pranayama) with Western physiotherapy breathing techniques (autogenic drainage and FET), and physical yoga postures (asana) into my personal yoga practice.
It was everything I ever loved about yoga combined with everything I knew about how to clear my lungs using my own breath
My CF clinic has always been super supportive of my choice to use autogenic drainage and encouraged my new explorations of yoga breathing methods alongside it. With my CF care team, we've always focused on care options that enabled me to keep singing professionally, traveling the world, and supporting what is important to me. (In fact, my CF team has even referred other patients from my clinic to my classes at CF Yogi!)
Through these experiments, I found that I did have stuff down there, and I COULD get it out. As I grew more confident, I learned to re-interpret the sensations in my lungs and respond with beneficial breath and movement.
It has become a routine I actually look forward to every morning to start my day.
I am hooked. As long as I've got this chronic lung infection in my body, I know that it will take daily, active management. But finally, I have something I can do that doesn't feel like I have to tune out my awareness to just get through it. I can actively participate in my own daily health.
In this life of chronic, invisible illness where there is so much beyond our control, this is one small way where I can see what is within my control and respond accordingly.
Elaine K. Malik
Adult with CF
An opera singer, choreographer, voice actor, and freelance writer based in Seattle, Katie's travels have taken her around the country and the globe. She has been on solo tours in Europe and Asia, and on multiple trips to Sweden -- where her inspirational
story captured the country's heart on the top-rated, international, Emmy-winning TV series, Allt för Sverige. Also a registered yoga teacher, Katie created a video series for Pacster.com in collaboration with the Cystic Fibrosis Trust, “Yoga
for Cystic Fibrosis.” She holds a BA in vocal performance and music theory from Seattle Pacific University, where she received the Philip J. Mack music scholarship and graduated magna cum laude. You can connect with Katie on Facebook, Instagram, Twitter, and LinkedIn,
or visit her website, katiemalik.com.
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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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