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.
During a health crisis, we can focus on our pain so much that we don't take time to acknowledge the pain of others.
March 17, 2017
Saying Goodbye to Pediatric CF Care and Hello to Adult CF Care
Diagnosed Before Birth: Getting My Daughter’s CF Diagnosis
We walked out of the intensive care unit (ICU) and turned the corner to walk toward the elevator. After too many days of watching my wife on a ventilator in a chemically induced coma from end-stage cystic fibrosis, I had learned that it was necessary to break for lunch.
The lobby was filled with quiet sobs and red eyes, and one voice rang out: “YOU can't be here!” We were soon blocked by a red-faced man, angrily telling us that this area was closed. He definitely wasn't a staff member and looked like he was ready to throw down. As someone with a lifetime in the martial arts -- as a competitor and an instructor -- I was not about to be intimidated by his antics.
I told him, “We are going to the elevator,” and he directed us to walk around. I asked him why and he told me that his sister had been admitted the day before. She had seemed perfectly healthy days earlier and now the ICU doctors were suddenly saying that she would not likely survive the week. As he calmed a bit, he told us again to “Go around …,” and that his family was in mourning.
I thought that this guy was going to have a tough day if he thought he could stop every person walking through the lobby to visit someone in the ICU, but I told him that we would do so if he showed us the way. As we walked, I mentioned that everybody has a tough story in the ICU. Nobody was there because things were going particularly well, and there would be a lot more family members coming to visit their loved ones that day.
I never told him my story because that didn't matter. His tone started to change as he thanked us and then followed it shortly with an apology. By the time we got to the elevator, he was apologizing, almost profusely. I felt for him even though my wife's prognosis at the time was no better.
In his world, his and his family's pain was worse than any other visitor's. They had the right to the waiting area because they were suffering the most. As the weeks passed, I witnessed this same sentiment at the core of so many conflicts. And nothing good ever resulted when someone compared their pain to the pain of those around them.
Don't get me wrong, it is good to tell stories in an effort to relate to those going through a challenging situation, but a one-up type of discussion misses the entire point, empathy. And, trying to listen with pure empathy is tougher than it sounds.
Months later, my wife Rebecca had beaten the odds and received a life-saving transplant. Back in the ICU because of complications from stomach surgery, she was again on a ventilator, with me worried for her life.
In a nearby housing facility for patients and family, I found myself chatting with an older lady who had asked why I was there. She related quickly because she had experienced ten stomach surgeries. She began to go on and on about how tough hers had been, and she seemed to ask me questions the only intent of which was to frame her story. As she glossed over my explanation of Rebecca's internal bleeding, I began getting frustrated, so I mentioned that the surgery was needed to protect her newly transplanted lungs, which had come just in time to save her life after six months on life support.
With a few quick sentences, I had “won,” she didn't know what to say, and it got a little weird. We were both guilty of trying to one up each other, and suddenly it wasn't about empathy or learning each other's stories; it was a competition to see who suffered more. The reality is that nobody wins any of these competitions and when we let it get to that point, we're expressing that we cannot empathize because we have experienced worse.
The value of these conversations during tough times is to share knowledge and support, and empathize with one another.
We can provide encouragement and support for those dealing with the impacts of medical challenges because we can relate to them on a level that few others can. However, before sharing those experiences, stop to listen and understand first. Even if your experience is worse, that's not the point. During countless months of interacting with caregivers, in-laws, and strangers, I found one approach always works the best -- empathy.
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. It 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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