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.
Hindsight is 20-20, so I wrote a note to my younger self to explain all the things I wish I had known when I was teenager coming to terms with my cystic fibrosis.
January 3, 2019
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It's me from the future. Yes, we're still here, and no, it wasn't easy.
But it could've been ... well, easi-er, at least.
For starters, do your meds, man. I know they're a pain, but do you know what's worse? Dozens of hospitalizations between the ages of 16 and 34. Your arm is
going to look like an unfinished connect-the-dots drawing made out of scar tissue. And once you move out of the pediatric wing, admissions aren't even fun anymore. No one brings you candy or video games; you just have to listen to old people fighting
with nurses in the room next door.
Look, I know you're a little mixed up about being sick. You're shy and embarrassed about having to take medications and do therapies, but that is no excuse. You need
to do your meds if you want to be healthy, regardless of the situation.
This, conveniently, brings us to my second point: Own your cystic fibrosis. There's no shame in admitting you have CF, and believe it or not, there are actually some perks. With a doctor's note, and a little backbone, you can go ahead and get yourself
a single dorm room when you head off to college, so you can do your meds in peace and avoid walking in on your roommate having a shaving party with
the rest of the swim team. (Yes, that really happens, and no, that's not an exaggeration.)
Also -- and don't tell your future wife I told you this -- you can get a handicapped parking permit so you won't have to hike a half-mile uphill to get to class. I mean, you need to exercise, and we'll get to that in a second, but struggling through all
that exhaust? Not great. Oh, also? Early boarding on airplanes. All yours if you can find the courage to ask.
Now, back to exercising -- you should do that. I know you ran track in middle school before you started hanging out with all the too cool kids who didn't believe in
group activities, and that's fine, but here's the thing you're forgetting: All that running helped you out. It kept your lungs clear. That is an empirically good thing for you. And honestly, it's going to make my life easier too. Because trying to
learn how to run again at 38, after not having moved in 20 years, is obnoxious and dumb.
Speaking of stupid: Stop hanging out with smokers. I know this one seems obvious, but I also know you. They seem cool, sure -- and OK, yes, some of them are cute -- but you can still ask them not to smoke around you. If they actually care, they
will stop. If they won't? Find better friends.
Also, actually study. Grades matter. College matters. I know you're prone to nihilism and apathy, but trust me, trying is cool. Pick a major and go after it instead of slouching into whatever seems easiest.
This brings us to the larger point I'm trying to make: Plan your life like you're actually going to live it. I know we were told a lot of seriously depressing and disconcerting things about dying young, but turns out, they were all wrong. The
life expectancy for people with CF born between 2013 and 2017 is 44 -- or 50 in Canada -- and those numbers keep going up. And look, I know we're not good at math, so I'll spell it out: Both of those numbers are significantly higher than
21, which is the age you're doing most of your “planning” around.
I'm not going to pretend that being told your life has a time limit isn't going to mess you up; it will, and it does, leaving you with lasting damage. But you need to try to ignore it. Because here's the real, dirty truth: Even if that number remained
low, even if you were going to die at 21, it wouldn't change anything. You can't live your life in fear, or shame, or by some generalized prediction.
Nothing is guaranteed, good or bad, and there are always outliers. There's a dude with CF right now who looks like Thor, like, legitimately -- and he's not the only one. There's a whole subset of CF bodybuilders, marathon runners, and mountain climbers.
And OK, maybe that's a little too hopeful for you, a little too aspirational. High school is a mess, I get it. So, let's lay this out in a way even your grunge-loving pessimism can understand: A satellite could fall from the sky and explode half a city
tonight, but that doesn't stop anyone in New York or Los Angeles or Toronto or wherever from going about their business. There are school shootings and car accidents and cancer, but most of us aren't huddled in our houses too afraid to go out to dinner.
At the end of the day, every life is finite and fragile. But we all keep living anyway -- not in spite of that fact, but because of it. That fleetingness is what gives life value, like a live concert or a limited-edition variant comic book cover.
So, get out of your own head and start acting smart.
After all, if the impending heat-death of the universe isn't going to stop you, why let some arbitrary number get in the way of the rest of your life?
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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. 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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