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.
Having cystic fibrosis, I learned about social distancing long ago. Here is my advice on remaining socially connected.
April 3, 2020
Exceeding My Fitness Goals With Trikafta
A Doctor’s Perspective on CF Care
Why take advice from me?
I can't see some of my very best friends in person. We can't be in the same indoor space and -- when we are outdoors -- we need to maintain a distance of at least six feet. I wear masks in clinical settings, because I never know who is walking past me in the hall. If I were to meet, touch, or be within six feet (coughing distance) of another person, we could pass germs to each other that could potentially be deadly.
Sound familiar in the current COVID-19 environment?
Even when one of my friends is sick, even critically ill, I can't see them. I sit at home waiting for a text or social media update. When one of my friends passes away, we can't congregate. I grieve alone at home.
Sound even more eerily familiar?
This is a temporary circumstance for everyone during the COVID-19 global pandemic… But, it's a forever reality for all of us living with cystic fibrosis. I will never meet some of my very best friends face-to-face.
Does it feel unfair? Always. But, here's the good news: We all can work together meaningfully, celebrate together, and connect emotionally without ever being in the same room.
I wanted to take this opportunity -- when the general public can best understand these feelings of isolation -- to share my experience helping to create our first ever BreatheCon in 2016. This virtual event was created, planned, and executed by adults with CF. We had an idea for a multi-day conference to bring people with CF together. But we had no idea what that would look like, or if it would even work. I'll admit I was skeptical.
The BreatheCon introduction began, “For many, living with cystic fibrosis means living isolated. Cross infection. Hospital stays. Financial hurdles. Travel constraints. Many people with CF are unable to connect with those they may relate to the most: other people with CF.” We met for two days in a virtual beach environment. We had keynote presentations, chats, small group discussions, yoga, and mindfulness activities. We were attempting to create not just an event but a community. The response was overwhelming and exceeded our expectations.
BreatheCon was a response to feelings of isolation, complicated by cross infection, hospital stays, financial hurdles, and travel constraints. I'm not sure there has ever been a time -- or will ever be a time -- that this is more relatable to a non-CF audience. Perhaps you can now better understand how monumental this event was. The first time some people with CF ever spoke to another person with CF face-to-face. Planned by a group of people who have never met -- and probably will never meet -- each other in person. Perhaps you'll even understand why I can't watch the recap video without tears coming to my eyes. It's that powerful. And, it worked. It really, really worked.
Virtual events have proliferated throughout the CF community since this initial BreatheCon experiment. We've made new friends. We've deepened existing friendships. We've cried. We've laughed. We've had parties and played games (Jimmy Fallon's ”box of lies” remains my favorite). We've exercised and danced. We've shared our intimate hopes, fears, and we've trusted each other to open up about some pretty taboo subjects (the MiniCon on sexual and reproductive health, anyone?). We've learned about CF research. We've created art and harmonized in song. We've inspired and been inspired. We've accomplished. We've felt deep camaraderie. Separate. But, together.
So, to all those of you “living virtually” for the first time, you can do this. Be creative and take risks. You need connection during this time of social distance, just like people with CF need connections with those that truly understand. I've already hosted a virtual third birthday party for my son with our family. Was it seamless? No. But we laughed, we learned, and connected. Distant friends are connecting virtually because -- right now -- it doesn't matter if you live down the street or across the country. I've seen virtual happy hours and so much creativity already.
You may be self-isolating but -- thanks to technology -- you don't have to do it alone.
So, go. Reach out. Connect. Experiment. Live while social distancing. And, if you're struggling? Just ask an adult with CF. We're trained for this.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Kristin was diagnosed with cystic fibrosis at 3 weeks old in 1982. A graduate of Boston College, she had a decade-long career as a financial analyst before retiring to focus on her health. As a CF advocate, Kristin serves on many CF Foundation committees including the Adult Advisory Council, the NACFC Planning Committee, and the Care Center Guidelines Steering Committee. She has been an active fundraiser through her employer and with friends and family. In her free time, Kristin enjoys reading, drinking copious amounts of tea, doing pilates and yoga, and spending time with her husband, Matt, son, Declan, and two cats at home in New Jersey.
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