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.
Not having a roadmap for life wasn't a problem when I thought I wouldn't be around long enough to take the trip. A double lung-transplant has me rethinking this belief.
April 12, 2017
How CF Shaped My Positive Outlook
Why I Kept My CF a Secret at Work
Growing up with cystic fibrosis, I was told that I would die young a lot more than most other children. At age 10, I was supposed to be dead by 17; at 17, it was 25 ... then 30, then 34. I'm currently pushing 40 and still not dead, so maybe you can see the problem here.
Before my double lung-transplant 2 1/2 years ago, I didn't believe in a future, much less plan for one. I never gave much thought to “living my life to the fullest,” because struggling to live was a full-time position. No backpacking through Europe for me, thanks, but you can send a postcard to my hospital room.
Jobs were jobs, not careers. I needed to pay for rent and ramen and not much else. I worked whatever was easiest -- at Blockbuster, call centers, a ton of terrible temp jobs. I didn't need a 401(k) or a retirement plan, just a job somewhere with half-decent insurance that was cool with me taking a lot of sick days. Invariably, these kinds of jobs ended up being of the high-turnover, customer-service variety, with little room for advancement. And the more I worked them, the more my chances of working anything else disappeared. While other folks were spinning out over this, all I could do was shrug. What's the point in worrying about 20 years down the road when I might not make it 20 days?
As I continued to not die, however, I began to have fleeting thoughts that maybe this wasn't the right approach. Something like hope glimmered on the horizon, and I began wondering if maybe I should have tried a little harder, been a little pickier; maybe I was the exception when it came to CF?
Then I ended up on 10 liters of oxygen and listed for a
transplant, and planning for anything other than a funeral seemed like a waste of my rapidly dwindling time.
But now, post-transplant, all that stupid hope is crashing down over me again. I know I'm not guaranteed a future, but reaching age 50, maybe even 60, suddenly seems like a very real possibility. I need to reconsider all those things I brushed off before, including my place in the world.
Ironically, the part I spent the most time worrying about -- my career -- is now the least of my problems. For the moment, I've managed to cobble together a moderately successful series of freelance writing jobs. But with that hurdle cleared, it makes the other, much larger issue abundantly obvious ...
I have no idea what to do with my life.
Turns out, there is more to life than just covering your mortgage and staying fed. Now that I'm not struggling to stay alive all the time, I feel like I need to do something; something that makes a difference in the world. Because it's not really just my life anymore, is it? Someone died for me to be here; what do I owe him? How do I pay back my wife and family for all the sacrifices they have made? Is it enough to lead a good life, to be happy, or do I need to take all of the pain and suffering and turn it into something tangible, something that helps others?
I'm learning there are no easy answers to these questions. And there's certainly no universal catch-all.
The biggest struggle I've had with all of this is fighting the feeling that I'm being selfish, stalling and wasting everyone's time with something I should have figured out by now. Why do I get to go on nature walks and road trips, trying to “find myself,” while everyone else is busting their butts behind desks or climbing up telephone poles or wrangling kids or slinging coffee? As a very angry cop once asked me when I tried to pull into a handicapped parking spot, pre-transplant: “You think you're special?”
Well, officer, yes.
I came to terms with the fact that I would die young a long time ago. That was all I heard, so that became who I was, and I found a way to make my peace with that. But that's not normal. Most people don't have to deal with that kind of burden, much less its sudden and drastic removal. After a lot of time -- and a couple of therapists -- I see that now.
I'm not young anymore. No one's telling me I'm going to die anymore. I've got a second chance now, a second life -- and I'm realizing that life might actually have value. So, yeah, it's all right if I take a little while to come to terms with that, if I need a second to rethink some things. After all, you're only supposed to get the one life, right? I don't want to screw this up.
Adult with CF
Eirik Gumeny is a freelance writer and the author of the Exponential Apocalypse sci-fi series. His work has appeared in publications ranging from Cracked to The New York Times. Diagnosed with cystic fibrosis at age 3, Eirik had a double lung transplant in 2014. He lives in Albuquerque, New Mexico, with his wife and their two terrier terrors. His website is egumeny.com, and you can follow him on Twitter and Facebook @egumeny.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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