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.
When my wife's health declined and we didn't know if she'd be able to undergo a lung transplant, I decided to reject blind optimism and pessimism and chose a third path.
July 18, 2018
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I read so many Facebook comments that stated “things would work out” as I sat in my wife's hospital room. I wished I believed them. What did they know about Rebecca's condition and what comes with end-stage cystic fibrosis? It sounded like the blind optimism
that you see in memes. You see the words “Just believe” in front of a rainbow or something.
Well, I didn't believe that things would just work out simply because we hoped hard enough. When Rebecca suffered respiratory failure and was placed on a ventilator, I knew that her situation was dire. At the same time, I knew her drive and her strength
would work in her favor. I wasn't being pessimistic. The funny thing is, whether you're talking to an optimist or a pessimist, they both think their predictions will come to pass. That's because everyone thinks they are a realist.
The danger of being an optimist is that blind faith can lead to a terrible surprise because you haven't prepared yourself for bad news. As a CF spouse, I am reminded every day of the risks to my wife's health. I watched her on a ventilator for six months,
hearing abysmal news about her deteriorating condition. Had I lost her then, it would have been devastating but I doubt that the surprise from it would have been the worst part. Expecting bad news would have not made the loss any easier.
The real danger of blind optimism is that you might fail to prepare for more than one scenario. Had I simply believed that Rebecca would recover, I wouldn't have worked so hard to get her listed for a transplant.
Had I simply believed that she would get listed, I wouldn't have pushed her so hard during her physical therapy sessions. And had I simply believed that she would get a transplant in time, I may not have said the things I needed
to say while she was so close to death. Knowing her declining chances for survival motivated me and provided direction. Hearing that bit of reality from the doctors allowed me to respond and affect the odds for the better.
Conversely, pessimism certainly has its pitfalls. It's hard to put your all into working toward the best outcome if you're already convinced it won't come to pass. And after waking from a six-week coma and finding herself on a ventilator, the last thing
Rebecca needed was to see me give up on her. When she was too weak to lift her arm, much less stand, it was my job to motivate her. That says nothing of the fact that thinking the worst (for lack of a better word) sucks. Some of the toughest nights
of my life were spent sitting in my empty house imagining a future where Rebecca never came home. Looking back, I can say that fewer of those nights would have been inarguably better. Even if she lost her fight, experiencing those dismal
nights beforehand would not have made mourning any easier. Those nights just made it harder for me to get up the next morning and keep trying.
I see the danger of pessimism as lost motivation. Had I simply believed that Rebecca would not recover, I wouldn't have worked so hard to get her listed for a transplant. Had I simply believed that she would not get listed, I wouldn't
have pushed her so hard during physical therapy. And had I simply believed that she would not get a transplant in time, my negative outlook may have affected Rebecca when she most needed my support and her resolve.
So, what are we left with? Since we already think we are realistic, I propose something slightly different: realistic optimism. The idea is that we can choose to be positive today while staying informed so we are prepared for tomorrow. We can accept harsh
possibilities but resolve not to let it sap our motivation. We can contemplate the next steps yet remain present with our loved ones. We can believe in a plan, but not only believe in a positive result.
As CF families, we are constantly forced to walk a line between managing the bad news we receive while striving to remain hopeful for the future. After receiving our fifth consecutive transplant center rejection,
I'd be lying if I told you I wasn't crushed. But I had to choose how I would present it to my wife. “They may have turned us down but now we won't waste precious time at a hospital that would have rejected us.” We faced a difficult reality but chose
to be optimistic. For us, realistic optimism proved, through the toughest of circumstances, to be our best approach to living with this disease and the incredible challenges that it brings. Together, let's stay realistic and be optimistic because
our hard work puts us one step closer to a cure!
Husband of a woman with CF
Ray Poole is married to Rebecca, who was born with cystic fibrosis. He became involved with the Cystic Fibrosis Foundation and was named “Milwaukee's Finest” in 2013. He is currently a member of the Cincinnati CF Foundation leadership board and serves as the chair for Tomorrow's Leaders. He holds a bachelor's degree in mechanical and materials engineering and a master's in business administration. Ray has recently worked as an engineering manager and product manager in the electrical industry. To find his book, Lessons From a CF Cornerman, TEDx talk, or Hospital Comfort Kit, visit CFcornerman.com.
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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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