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.
Preparing to be listed for lung transplant taught me a great deal about what to expect during the transplant process and helped me form bonds with others going through the process with me.
August 27, 2019
Scenes From A Hospital Room
5 Ways Were Finding Our Normal
I've been expecting transplant to be around the corner for many years. I've been slightly too “healthy” to be in the window for transplant in the eight years since I was first evaluated (what happened after learning I needed a transplant is a separate story). But I'm digressing. Last winter, I became very ill, and decided to move forward with the process. The transplant center at Duke University requires extensive pulmonary rehabilitation and education before they will agree to add someone to the transplant list. I was surprised by what I learned and the relationships I forged with those going through the process with me.
The only things others who have gone through the transplant process told me were that I would be exercising for nearly half the day in the pulmonary rehabilitation center and that the physical therapists mean business. Some evenings after a day of exercising and lectures, however, I questioned whether life after a transplant would really be that much better because of all of the things they told me could go wrong. But the lectures left me with realistic expectations, something I viewed positively.
The level of detail has been eye-opening. I have gained extensive knowledge about the names, both generic and brand, of all the medications to suppress my immune system I will be on after transplant, their typical dosage, the time they are to be taken, and the mechanism by which they work. They described my anatomy and showed me how the incisions will be made on a dummy skeleton. I learned I may experience back pain after surgery because my arms will be pinned overhead for hours on the operating table. I've practiced swallowing exercises weekly to strengthen neck muscles so I don't aspirate into my new lungs after surgery. I learned to get comfortable with the possibility that I may have severe bowel problems immediately after surgery and could need a diaper. Hopefully that was a joke!
Some pieces of information were more bothersome than others, especially understanding the immediate and long-term side effects of the medications, risk of cancers and kidney and liver failures, and the possibility of organ rejection, which I had already known, in a post-transplant journey.
But being required to exercise for two hours five days a week motivated me and gave me a sense of accomplishment. Biking just one-tenth of a mile further encouraged me. Trying to pedal as fast as the lady next to me challenged me.
The best part of this journey has been forming bonds with the other transplant candidates and their families, rooted in the shared experience of going through it at same time. My parents (who are my caregivers during the transplant process) and I moved to apartments across the street from the pulmonary rehab facility along with most other transplant patients and families. I knew everyone's names after three days. We learned about each other's families and interests outside of our lives at the rehab center. Most people were typically older, but we care about each other just the same. When we learned that someone was listed during our group exercise class, we would all cheer. When someone got their call to transplant, the word would spread by the next day and we would all be thinking about them.
The bonds we developed run deep. We received updates on the progress of members of my rehab group after they underwent transplant. I visited a transplant recipient when she was close to discharge after her transplant, and her smile and happiness gave me so much joy and hope.
So many of my fears of this process have been eased through hearing about a full life on the other side of this journey and watching a re-transplant recovery go smoothly with the help of an amazing transplant team, family support, and individual will power. Forming these friendships through this process has eased my fears and anxieties about my own tremendously. I have seen the real-life examples of the amazingly resilient human body and spirit of those who have gone through it before me.
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Adult with CF
Diagnosed with cystic fibrosis at 18 months old, Ella graduated from Virginia Commonwealth University with a bachelor’s degree in biology in 2014. She works part-time as a lab manager in an environmental microbiology laboratory at the university, working with many CF microbes. Ella has become more involved in the CF community, and, as a director of United States Adult CF Association, she strives to help educate and support others facing the same challenges with CF. She enjoys cooking, drawing, writing, spending time with friends, and traveling as much as she can. Follow her travel and life experiences on her Instagram @thisgirlella.
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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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