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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.
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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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
In the third plenary of NACFC, three guidelines authors announced the publication of guidelines for screening and treating depression and anxiety, and explained how the guidelines were developed. Read on for my thoughts.
Paula Lomas, M.A.S., RN, CCRP
October 10, 2015
How an Experimental Drug Becomes an Approved Therapy
Opening Doors to CF Clinical Research
I left plenary 3 at NACFC, "There Is No Health Without Mental Health," energized by the idea of including emotional wellness in the care for people with cystic fibrosis and their parent caregivers. At the session, Alexandra Quittner, Stuart Elborn and Beth Smith, three members of the guidelines writing committee, announced the publication of guidelines for screening and treating depression and anxiety and explained how the guidelines were developed. The session's three presenters were part of a writing committee that brought together an international team that included mental health experts, three parents of children with CF and an adult with CF to provide guidance on making screening and treating depression and anxiety a part of routine CF care. Although adapting CF care to include the recommendations in the guidelines will take time and effort, the care center teams that do so will be providing an example of comprehensive care to the health professionals who treat other chronic diseases.
The guidelines propose that just as measuring height, weight and PFTs are part of CF care, screening and treating depression and anxiety should become a routine part of CF care too. Although it will be a significant change for care teams at first, screening for depression and anxiety should not change the care center experience for patients and parent caregivers much at all. Completing a couple of short questionnaires will take only a few minutes and is completely voluntary.
Including emotional wellness in CF care is necessary.
We have known for years that people with chronic diseases are more likely to experience depression and anxiety. Dr. Quittner emphasized this point while presenting the results of the TIDES study, the largest international study for screening people with a rare, chronic illness.
TIDES showed that depression and anxiety are two to three times greater among people with CF and family caregivers than the general population. We also know that depression and anxiety have very real and negative effects on physical health, which is why these conditions need to be addressed as part of CF care.
In addition to presenting the scientific reasoning that led to the guidelines, the plenary session also featured videos of people in the CF community who have struggled with depression and anxiety. Andy Lipman, an adult with CF, and Kat Quinn, who has a daughter with CF, both talked honestly about the emotional burden of CF and how important it is to identify and treat depression and anxiety. Their testimonials put a human face to the research and showed what the statistics could not -- how depression and anxiety affect the CF community, why these guidelines are so necessary and why making them part of routine CF care must be a priority.
The guidelines represent a good first step in making emotional wellness a part of standard CF care. This will not be an easy step for care teams. These guidelines are not a mandate from the CF Foundation to care centers. Implementing them will take time, effort and resources. It also will take commitment, but my sense from those at the plenary is that the commitment is there.
Although people with other chronic diseases struggle with anxiety and depression, screening and treating depression and anxiety is not a part of their care. By screening and treating depression and anxiety now, CF care will be the model for other chronic diseases. I believe that once we do, others will follow our lead.
Creating the guidelines was a bold statement that showed we mean to provide the most comprehensive, coordinated care we can. We in the CF community should take the energy and excitement generated by plenary 3, roll up our sleeves and get to work creating the model of care that others will follow.
If you did not have the chance to watch this plenary live, watch a recording of the third plenary here.
Paula Lomas, M.A.S., RN, CCRP
Director of Clinical Communications, Cystic Fibrosis Foundation
Paula has 26 years of experience working with children and adults with CF and their families in the role of nurse coordinator. She has also been a research coordinator for various CF clinical trials. Paula is a credentialed quality improvement coach and an advisor for the CF Care Model Design Project, and is passionate about improving care delivery.
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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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