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.
Although many of us were never able to meet Claire Wineland in person as fellow CF patients, her legacy and approach to the disease continue to have a major impact on the CF community.
September 13, 2018
Using Art as an Outlet
Your Stories of Random Acts of Kindness
The CF community has lost someone special.
Several years ago, I watched a powerful TED Talk that Claire Wineland gave at the age of 14, in which she said, “People tend to get discouraged when they have problems or a thing to overcome, when really that's the part to cherish life the most, you know?
That's when you get to get the most out of every second of your life.”
She then let out a rattling cough and joked, “Whoops, hairball.” At that moment, I smiled and thought, “Who is this awesome person?” I researched her incredible foundation and more about her life. And suddenly, I was drawn into a different worldview --
a new way of understanding my illness, my sense of confidence, and my life expectancy.
Since my lung transplant in 2012, I have experienced many joys and exciting changes in my life, from marriage, to fostering, to graduating with my master's degree and pursuing a career. I have also had a permanent tracheotomy placement since the surgery and lived with frequent panic attacks.
Aside from the help professionals can provide, I found that my anxiety -- mostly about the inevitability and nearness of death -- was eased when I worked
at maintaining a healthy philosophy about early mortality. In “My Last Days: Claire Wineland” and other videos where she has spoken on this topic, Claire relayed a philosophy that hit home for me.
“Death is inevitable, but living a life that we are proud of … that is something we can actually control,” she states in the documentary. In other self-recorded videos, she speaks at length on this in the same way I might run through my own thoughts.
She didn't sugarcoat problems or put on a fake smile, but she knew how to mitigate her suffering and assign it meaning. Many would call that wisdom, but it is also a practicable skill; Claire modeled how to do that.
Although CF patients are unlucky in that we have to avoid personal contact with each other to prevent the spread of germs and infection, we are so lucky
to be alive with today's technology, which allows us to say we "knew" Claire -- just in a different way. We followed her on Facebook or Instagram. We watched her YouTube videos. While this sounds so distant on paper, the community she created and
the sentiment she shared with us were all very real. It is not strange to say you will miss her and that you feel deep sadness and loss.
We are not her family, close friends, former teachers, or doctors and nurses. We do not know the grief they are enduring. But, the fact that the majority of us never knew her in person does not diminish the impact she had on many of our lives. On social
media and beyond, followers are sharing story after story of how Claire pulled them out of negative spaces and into new ways of understanding their disease.
Tears came on and off all weekend after I read she'd had a stroke. I prayed, and I hoped. I checked back for updates. I wanted to see her emerge stronger than ever. I was excited for how she would feel taking those new breaths. I was eager to observe
all she would accomplish after her new lungs healed. I was rooting for the road ahead -- for the life that this brilliant, songful 21-year-old would continue to live.
She is not just an inspirational figure in cystic fibrosis. We have lost a sister. A kindred fighter. A voice that helped make sense of some big questions.
For that, it can be difficult to separate ourselves from her story. It is helpful to share our experiences with CF so that we don't feel alone, but our empathy can be overpowering. Our observations as CF patients, the progression of our disease, and our
pain are at times so synonymous that we hear each other's stories with searing precision.
Claire fought hard and had also arrived at her own philosophy to accept what she couldn't change. She encouraged others simply to live in a way that makes them happy and fulfilled. To do so is not only doing justice to her message, but to your own worthwhile
existence as well. In her own words, “You have to find what makes you feel really alive, and you gotta just go with it!”
Claire spoke to the grim realities and morbid fears we encounter with chronic illness. Her honesty resonated because she had a bold way of reframing it all. She didn't dwell on death, but fixated on what made her happy instead.
She reminded our world of the lighthearted whimsy life still holds, from her world traveling to her singing to decorating her hospital room with posters and strings of lights to make it feel like home. With Claire, it was as if being alive was just the
difference between grabbing hold of a bouquet of brightly-colored balloons and letting them go, watching them dance off to heaven.
Rest peacefully, Claire. Your influence on this world ripples on.
Join the conversation on Facebook.
Adult with CF
Katherine was diagnosed with cystic fibrosis at 6 months old and received new lungs at age 22. She works in criminal justice reform and human rights advocacy and is also a published author. Originally from Buffalo, N.Y., she now lives in Washington, D.C., working as the director of reentry and victim services at a nonprofit.
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