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 agree with the saying that laughter is the best medicine. I've been taking it for years.
July 1, 2020
Managing CF, Parenting, and Anxiety
How Being Furloughed Taught Me to Slow Down
Space travel is going to be interesting. I lock the pressurized air tubes into my vest -- I'm going to be taking off soon. I use my finger to press a few more buttons on my archaic display and prepare for liftoff. It's going to be a bumpy ride. I hear
the engines firing up, and my small space is immediately overwhelmed with machine noise. If there were any existing background sounds, they are now completely engulfed by machine whirring. I flip one more switch, and the room fills with vapor. I'm
taking off now. My body rattles against my chair, and I can't suppress my cough as the vapor fills my lungs. This is the moment that humanity has been waiting for, and I can't believe it's actually happening now. I'm in the driver's seat.
It's the season finale of "the-TV-show-everyone-is-watching-but-I'm-not-legally-allowed-to-name-in-fear-of-copyright-infringements." Sorry, folks, if I clickbaited you -- I'm actually on my couch. I'm doing my vest breathing therapy.
In high school, I would savor the moments when my parents would have guests over to the house while I was "lifting off." The unsuspecting church-going friends would pass my room that was filled with nebulized saline steam and question how lax my parents
were with recreational drug use. After a few more attempts to inconspicuously glance into my room to get a grasp on what I was doing, they would always see my shaking vest; this would only elicit more confusion. They would try not to stare. If they
looked especially concerned, sometimes I would roll my eyes back in my head and shake my limbs and body as if I were having a seizure. At that point, I would chuckle to myself as I'd observe guests try to politely ask my parents what was going on.
Clearly, I've always thought that humor is the best medicine for my cystic fibrosis.
My CF isn't a genetic disease, it is a genetic mutation that makes me a part of an elite community of superhumans. In 2037, when sputum production becomes an Olympic sport, we will leave the rest of humanity in the dust.
I'm personally prepared for the moment when females find the most attractive physical trait to be thick, sticky nasal congestion. I exercise every day, so I can be
prepared to flee from the hordes of beautiful women who will be trying to date me at that point. Two hundred years from now, we will prove that Darwin's theory of natural selection is true -- CFers will be the only people left on the planet.
I've found that my CF is unique to me; I have a very rare mutation combination that oftentimes makes me an outlier in the CF community. Because of this, I often have unique "personal side effects" to different standardized treatments. On one new medication,
I find that I drool in amounts that are typically reserved for pitbulls. Whether this uptick in drooling is due to Trikafta®, or my sudden insatiable obsession
with peanut butter chocolate, is yet to be determined. Either way, Trikafta's uniquely personal, miraculous treatment mechanism provides the perfect scapegoat for all my publicly unacceptable CF "features" -- especially those resulting in harmonious
sounds emanating from my rear end. There is a reason everyone wears a mask in the CF clinic.
SIDE NOTE: My CF nurse seems to be overly concerned about my personal virtue; I have never had a sip of alcohol nor have I used any recreational drugs -- just the thought of holding hands with a girl gives me a panic attack. Despite this, my doctors always
ask to see my fingers. They tell me that they're checking for "clubbing." I guess they don't believe the mountains of paperwork I filled out at the beginning. I came in for a lung consultation, not a moral interview. #CFprobs
As you can tell, humor is the way I deal with my CF. If you're looking to add another treatment regimen -- I highly recommend laughter: This therapy can be done on Earth or in outer space. Anyways, if you are reading this you probably already have a space
suit, too -- but don't plan on beating me to the moon.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Michael is a rogue electrical engineering student who enjoys writing more than coding. When he's not working on school, Michael is usually found writing a book, drafting a blog post, or out for a run soaking in the vitamin D provided by the California
sun. At the end of the day, the only thing Michael appreciates more than a good sale on delicious food is his family, friends, and faith. You can find Michael on Kickstarteror read his blog at genemodulator.com. Michael is a proud contributor to the Foundation, has raised funds for cystic fibrosis, and has spoken at a Foundation Great Strides event.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails