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.
Going from being pretty healthy for most of my life to being admitted to the hospital was scary and shocking. I decided to get help by asking for a peer mentor -- someone who also has cystic fibrosis. What I didn't expect was that I'd get amazing support and advice about CF and so much more.
Lise Courtney D'Amico
November 13, 2017
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This past year, I faced my most difficult time in my fight against cystic fibrosis. After leading a relatively healthy life, I was diagnosed with a rare lung infection that had a scary name and required a long course of IV antibiotics. I had never been so sick before and I had so many questions running through my mind. Was this the start of a life with CF where I was in and out of the hospital constantly? Was I going to be able to return to work
and keep up with my coworkers? Was this essentially the end of life as I knew it?
I was completely terrified. In search of support, I turned to my friends and family. They were sympathetic and said everything they could to show their love, but (through no fault of their own) they could never fully understand what I was going through.
I think that most CFers would agree that due to cross-contamination risks, cystic fibrosis can be an isolating disease. I felt completely alone and very scared.
I had no friends with CF that I could confide in, and I was not sure how to go about meeting other individuals with CF.
Somewhat magically as I was being discharged from the hospital, I received an email from the Cystic Fibrosis Foundation about CF Peer Connect, a new mentoring program where
people with CF can virtually connect one-on-one. I filled out the online form and received a phone call to talk about what I wanted in a peer mentor. I explained that I was looking for a female in her 30s who had a similar health status to my own.
In addition, I wanted someone who was employed so that we could speak about CF and career decisions, a topic in which I was particularly interested. About a week and a half later, I was matched with my mentor, Stacy!
During our first phone call, it was instantly apparent that Stacy and I were well-matched. We exchanged stories about our CF history and then moved on to telling each other about our careers, families, and hobbies. It was amazing how much we had in common.
Our medical history was remarkably similar, and we both seemed to share the same outlook on life. At the end of the phone call, we scheduled another chat for the following week. I remember hanging up the phone and thinking “wow, this is the connection I have been missing!”
Over the course of the next few months, my relationship with Stacy became stronger -- beyond what I had initially expected from a peer mentor. What began as scheduled weekly phone calls turned into daily texts or calls. My bond with Stacy is not over
how CF has negatively impacted our lives. In fact, we do not let that attitude enter our conversations. Instead, we have connected over our positive outlook on life and our shared drive to achieve. We have particularly bonded over our passion for
fitness and the benefits it has for our health. Although we live across the country from each other, we joined the same gym in our individual states and we work out “together.” We are even in the process of training for a half marathon! Knowing that
Stacy is heading to the gym and completing all of her treatments keeps me motivated to stay on top of my health and fitness.
The most incredible part of my experience with CF Peer Connect has been the transformation of my relationship with Stacy. When we first began speaking, I needed Stacy's advice and guidance on how to get through my illness more than anything. Stacy was
able to give me strength during an extremely tough part of my life because she understood what I was facing more than anyone else. She could offer me advice from the standpoint of someone who had truly been in my shoes.
Now our relationship has grown into one of two friends mentoring each other, rather than one of a traditional mentor/mentee. Today I offer Stacy as much support and guidance as she offers me. I am incredibly thankful for every conversation that we share.
I have gained the gift of a mentor, a friend, and a teammate, because Stacy and I are committed to winning the fight against CF together.
Lise Courtney D'Amico
Adult with CF
Lise Courtney was diagnosed with cystic fibrosis at age 2. After graduating from Boston College in 2016 with a degree in mathematics and economics, she moved to Washington, D.C., to work as an economic consultant. Lise Courtney works frequently with the CF Foundation and she completed the CF Foundation Xtreme Hike in Orange County, California. In addition, she serves on the board of the United States Adult Cystic Fibrosis Association. In her free time, Lise Courtney enjoys reading, attending Washington Capitals and Baltimore Orioles games, and running.
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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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