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.
Time after time, cystic fibrosis has shown me that what I thought was important could change with changing circumstances.
August 31, 2016
Keeping in Touch … With Your CF Body
Teaching as We Learn: Visiting a CF Care Center with Policymakers
Eighteen years ago, I met Rebecca, the woman I would eventually marry. She told me early on that she had cystic fibrosis and although I pretended to know what it was, she still provided me with an eight-page technical paper explaining the CFTR protein. Like many things with CF, what I thought I knew changed with circumstances or new information.
Over the years, I came to terms with what I thought Rebecca's CF meant as we built our life together. An argument disrupted by a coughing fit was often a stark reminder of what was truly important and the precious nature of time. Along with all of the medical challenges, her illness brought me perspective about what was -- what is -- truly important.
Roughly 17 years later, it seemed we had faced it all…CF-related diabetes, “tune-ups,” supplemental oxygen, and infertility. I was an expert in all of this -- until I wasn't. A weekend stay in Colorado turned a cold into altitude sickness, an oxygen saturation level of 52 percent, and ultimately, heart failure. This was a serious setback, and I worried that long hours at work and biweekly travel could exacerbate her declining health. It became clear to me that it was time for Rebecca to leave her job or, at minimum, reduce her hours.
The thing about perspective is that it is different for everyone. As convinced as I was, it was unlikely that Rebecca's boss would accept her resignation if it came from me and unfortunately, Rebecca had promised only to “consider” my impressively argued case.
Two months later, this decision was made for us as her progressive decline landed her in the intensive care unit (ICU). Yet again, I was prepared for anything -- just nothing new. It was New Year's Eve, 2014, when they intubated her and placed her on a ventilator. Her lungs had declined so quickly during that year that we had not even spoken about lung transplantation yet. It was shocking.
In an instant, my perspective shifted again. Vacation days were no longer for enjoyment; they were a critical resource allowing me to stay by Rebecca's bedside every day. In the beginning, I was worried that I would use them all up, knowing that I might require some for a future transplant, if she could qualify. These days quickly trumped salary and title as the most important benefits of my job.
As the month progressed, my perspective shifted again. Her care team told us that she probably had “days to weeks” to live. As I ate through vacation and then sick days, all I wanted was enough vacation time until she awoke from a chemically induced coma. Although my perspective had been that I could not lose my job because I still had to pay the bills, I began to think that an unpaid leave of absence would be a gift.
When Rebecca finally awoke in February, we had a whole new situation in front of us. Her body was atrophied. She was unable to walk, confused and unable to remember, on a ventilator and unable to qualify for a transplant. But … she was awake. All of the things I had wanted to tell her in January, I could tell her. Anything unfinished or unsaid could be resolved. I knew I would not be staying with my company for much longer, but suddenly, I did not care. My priorities shifted from holding onto my career as it was, to accepting that I could get another job. Perspective had shown that the most important thing was being there with her. I was either going to help her qualify for a transplant or enjoy our last days together as much as possible.
I have found that prioritizing another person's need over my own is usually not about making some dramatic sacrifice … but is often about making several smaller ones. I could not give up my lungs for Rebecca, but I could give up my job. There was no fantastic meal that would improve her week, but preparing a cooler with snacks and alternative meals could improve her day. It was not about running a half-marathon to support her … It was about finishing one and ignoring my wish to rest, so I could climb out of my seat to help her with physical therapy. By consistently remembering why I was there, I was forced to maintain perspective on these little things that actually make all of the difference. It may be impossible to be fully prepared, but a changing perspective can allow something that once sounded terrible to be acceptable. It can also take something that was expected, like another day together, and make it exceptional.
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.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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