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 a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.
June 2, 2016
From Teen to Adult Advocate: Oakey Finds His Community and His Voice
Empowering My Daughter to Take Charge of Her CF Care
On my journey with cystic fibrosis, I've been admitted to the hospital 10 times or so. And I'm lucky. Many of you with CF have been inpatients even more often.
As a hospital executive, it's always educational to be on the other side of health care, experiencing what you and other patients do. Hospitals are where we go to heal, and yet they often provide us with little chance for uninterrupted, peaceful rest. This is especially true for those of us with CF in the hospital. The battle against lung infections leaves us exhausted as we go through multiple respiratory treatments a day, battle the anxiety of having a PICC line inserted and fight the side effects of steroids.
When I have to go into the hospital, all I want to know is what I need to do to get better and go home. But often, getting to that golden nugget of information requires me to do some long, hard and repetitive mining -- while I am sick! First, I have to recount my medical and physical history, which is massive when you have CF. Also, I have to list the endless medications I take. I've started carrying a printout with me, just in case. Soon the parade of caregivers begins, with each person asking me to brief him or her from the beginning. Have you ever had so many providers come in and out of your room that you start wondering, “Who are these people?”
Well, I have. And as a hospital president, I'm blessed to be in the position to do something about the way we deliver care to patients. I know both firsthand and from many of you that the little things are important. I know that I feel more human, less vulnerable and more motivated to heal faster when I can wear regular clothes as long as possible, instead of being sentenced to days in PJs or a hospital gown. I know that I prefer private rooms and bathrooms, and I want to eat comfort food instead of something institutional. I know that once my IVs are in and oxygen is flowing, I want to walk and see beautiful colors, art and nature instead of lying in a bed or pacing endless hallways of beige.
At my hospital, Adventist HealthCare Shady Grove Medical Center in Rockville, Md., I share with my staff the importance of addressing these quality of life issues to create a more healing climate for our patients. But it's not just aesthetics, is it? More important, both when we are inpatients and every day in our disease management, we want and need to be on the care delivery team.
When I'm in the hospital because of CF, I want my night nurse to come visit before I go to sleep and make a plan with me. Will we leave the lights on? When will we set lines for blood draws?
While I am not the one doing the work, I am the one being worked upon. It is a sacred two-way relationship, and I am a crucial half.
It is important for our caregivers to understand that patients must feel valued. But the burden is not only on the caregivers. As we manage our CF, we must have the courage to ask our care teams to include us, nurture us and value us when it seems that they are not.
Help me be a better administrator. Have you learned that you are a valued part of your CF care team? I want to hear from you. What do you want to see from hospitals and health care? What's important to you?
Adult with CF
John has refused to allow CF to stand in the way of his successful career as a health care executive. John is President of Adventist HealthCare Shady Grove Medical Center in Rockville, Md., a 290-bed acute care hospital located just outside the nation’s capital. He also serves as Chief Operating Officer for its parent company, Adventist HealthCare. John is passionate about working with his community, physicians and his hospital staff to create a world-class patient experience. Before moving to Maryland, John served 24 years as President and Chief Executive Officer of Avista Adventist Hospital in Louisville, Colo. He holds a bachelor’s degree in Business Administration from Walla Walla College and a master's degree in Health Administration from Loma Linda University. He is a Fellow of the American College of Healthcare Executives. John lives life to the fullest and especially enjoys playing the cello for his church, running each morning, and spending time with his wife, Sue, and their two adult children, Greg and Rena.
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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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