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.
As the husband of Rebecca, who has cystic fibrosis, I've been criticized more than once for joking too much throughout our journey with CF. But if there is one thing my wife has taught me, it's that amazing courage is not improved by focusing on the imposing strength of the disease; it's magnified by laughing in its face.
June 9, 2017
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When two fighters square off in the octagon for a mixed martial arts (MMA) bout, serious determination rules the mood, concentration fills their eyes, and there is very little giggling. At least, that's the case for fights I've watched. So if this is how the pros do it, then maybe a serious demeanor is the best “game face” for any opponent -- even a disease like cystic fibrosis.
husband of Rebecca, who has CF, I've been criticized more than once for joking too much, although not by her. That was said by an in-law living 1,800 miles away. Meanwhile, Rebecca had been both laughing at my jokes and making a few of her own all along. So, what is the right amount of laughter to shoot for, if any at all?
About six weeks after
my wife was placed on a ventilator due to end-stage CF resulting in respiratory failure, she began to emerge from her chemically induced coma. Her very first expression was a smile that broke out as soon as she recognized me. Sedation and bedrest had caused severe atrophy, so we gave her some rolled-up washcloths to squeeze to improve her grip. It was a serious exercise indeed, yet when she got those washcloths, she started shaking them like maracas. Did that make me smile? Yes -- but was it strange that after a lifetime of fighting CF, she was doing the opposite of everything we had learned from the no-nonsense MMA fighting and Kung Fu movies I was kind enough to share with her over our 17 years together?
Unable to stand, they used a device called a Hoyer lift to place her in a chair, and she grinned from ear to ear the whole time. And when they set her up in the chair, she pointed her finger like a gun that shot imaginary bullets and began repeating “I'm a badass!” We had to read her lips because she had no voice with her tracheostomy inserted and ventilator running, but the smile on her face seemed to be the definition of a badass.
A tough person makes a tough face, but the toughest person laughs in the face of danger.
As she built up her strength and began to walk again, she would move down the hallway with the ventilator rolling alongside her, a walker in front, and caregivers all around. I joked that we should increase the challenge by placing cones for her to weave through and mini-hurdles for her to surmount. As she improved, I suggested lengthening the hallways because her walking game was TOO STRONG! Though we never hurdled and the hallway size was never modified, exaggerating her improvements was fun. To reiterate the story of her progress, I recounted her new personal records and accomplishments during hair-brushing or massage time (taking some occasional liberties to suggest that she could outrun her neighbor across the hall and suggesting they race for money).
We played music and tried to maintain a positive attitude. I chose to sing more loudly than the Bluetooth speaker so that she could appreciate my soothing (and in no way off-pitch) voice. Among those songs was “Eye of the Tiger” -- because who better to inspire survival than Survivor. When I brought in her actual cats to visit her in the hospital, I had hoped that they would demonstrate this “eye of the tiger” and inspire Rebecca to new levels of intensity. However, her cat Paul -- afraid of this new environment-- stayed on her lap cuddling with her, bringing little intensity (if any) to the situation. Meanwhile, I spent most of this visit on the floor chasing her other cat, Priscilla, and pulling her out from underneath various shelving units. Although the days crawled by like me after a dusty cat, we were making the best of them.
Amazingly, Rebecca received her lifesaving
double-lung transplant after 169 days on life support. I'm not aware of anyone who has survived longer on a ventilator after experiencing respiratory failure from end-stage CF.
In the time leading up to this, there were so many things we were forced to take seriously that it was nice to take as many moments as possible to smile. There is no question that my wife is a fighter, but her amazing courage was not improved by focusing on the imposing strength of this disease; it was magnified by laughing in its face. To her -- even if CF won the battle -- she was going to live her life and appreciate each day, because they belonged to her.
Perhaps that was the fight the whole time … to be present with our loved ones, smile when possible, and laugh in the faces of our opponents.
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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