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.
Relationships can be tough no matter what. But I have found that when you have cystic fibrosis, relationships require these three elements.
May 8, 2019
Watching My Parents Grow Older
Diagnosed With CF at 47
Living my life with cystic fibrosis, and then sharing that life publicly through social media, has brought many questions into my inbox over the years. But there is one question that always stands out: How has my relationship withstood the tests of CF?
Nick, my partner of three years, and I have been through plenty of tests, CF being only one of them. From meeting in Thailand, to long-distance dating over three time
zones, to moving -- and we can't forget all the things that come with normal relationships mixed in -- it's safe to say it has been an adventure.
When people ask how we make it work, many expect a response including some Harry Potter love potion, fairy godmother, or possibly a genie in a bottle. I hate to contradict the theory of magic, but it involves none of those things. I believe there are
three nonmagical elements that make our relationship work:
I could have printed out all 22 years of medical records on date number two and expected him to learn it all by the next morning, but that wouldn't have been fair to either of us. I had all of this knowledge and “baggage,” so it was understandable for
me to think, “Well, if you want to love me, this is what it is, take it or leave it, buddy.” But that was the fear talking, the “no one will love me” fear that CF instills in us so early on.
What we had to do was have continual two-sided conversations about CF. It would be all too easy for me to simply spit information at him, but that would be a monologue, not a conversation. He learned about CF, bit by bit, experience after experience,
one medication after another, like I did so long ago. I had to take it upon myself to give him the space and time to develop his own questions and his own concerns
about CF so we could come together and discuss it. By allowing Nick to develop his own awareness, education, and understanding of CF, we have cultivated a safe space for us both to express our concerns, feelings, and thoughts rather than just centering
around my own concerns and feelings. In a relationship with CF, it no longer is only your burden to carry, and that's what makes it beautiful and difficult at the same time.
Adult with CF
Chelsea was struck with wanderlust, a go-getter with a zest for life who has never let CF stop her. Chelsea graduated college cum laude with a BA in psychology and has channeled that passion for helping others into everything she does. You can
find her teaching yoga, sailing, flying to a new country, or showing those around her that cystic fibrosis does not define what she is capable of. Chelsea works very closely with the amazing research doctors at Johns Hopkins helping to raise funds
for CF research. You can follow her journey and adventures living with CF on Instagram or Facebook.
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