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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
There comes a time when all cystic fibrosis patients must come out of the closet.
September 23, 2015
Moving Forward After Moving Up
Orkambi: A Life Sentence
One of the major quandaries in a CF patient's life is if and when they should tell others about their illness. It's a difficult decision to make -- especially because chronic illness seems to carry a great deal of baggage. People tend to treat their disease like a skeleton in their closet. So there's definitely a learning curve when it comes to telling people about your CF.
There's also a lot of trial and error. I've made the mistake where you tell people who don't really need to know. I've also made the mistake where you don't tell someone, even though you should. For instance, once I was out to dinner with a guy who didn't know that I had CF. Hoping to preserve the illusion of flawless health, I decided to conceal my pancreatic enzymes. I waited for him to turn around, popped the pills in my mouth, and then realized that I had no water to swallow them with. Unable to open my mouth and reveal the pills, I kept smiling like an idiot as I felt the pills melding to the roof of my mouth. The guy was most likely wondering why I wasn't speaking, and also why I kept grinning like someone hopped up on Percocet.
I've also made the mistake where you thought you had told someone about your CF, when you really hadn't. I was talking to a friend on the phone once and actually said, "Sorry, I can't hang out tonight. I'm in the hospital." I, of course, thought nothing of this fact since I was fully aware that I have CF and that hospitalizations are therefore inevitable. But you can probably imagine the confusion and panic that my statement caused.
Turns out, you're going to want to field the CF topic before you casually mention hospital stays. Cherish that nugget of wisdom, cherish it.
Speaking of which, I have compiled a brief list of do's and don'ts -- my best advice for young and/or newly diagnosed patients who may be struggling with sharing their cystic fibrosis:
Anyway, these are just tips that have helped me in the past when faced with the "disclosure" issue. I should also say that if you are among those who believe that others will view you differently once they learn about your CF, fear not. You'd be surprised how mild people's reactions are when they hear that you have a disease. Most people don't think too much about it. Others forget almost immediately after you tell them.
To be honest, I have been in situations where people didn't take the news of my CF too well. It doesn't feel good, especially since CF can become such a huge part of who you are. But I've learned that it's best to write these people off the same way they did with you. After all, someone who's going to panic over the mere knowledge of CF probably can't handle the scarier things that the disease has in store. Plus -- and I don't know about you -- but I've never liked squeamish people anyway...
Contrary to popular belief, I am not a wizard who holds all the answers to life's quandaries. So I'd like to know what wisdom you all have to offer on the subject. How do you tell others about your CF?
Adult with CF
Mara is from New Jersey and was diagnosed with cystic fibrosis at birth. She is a Quinnipiac University Bobcat and is studying strategic communications and film. Mara recently served on a panel to discuss CF and the recent developments in precision medicine as a part of a Congressional Briefing in Washington, D.C. She also spoke at the launch of the Cystic Fibrosis Caucus in the U.S. Senate.
Share this Post
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.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails