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.
When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.
October 4, 2016
Waiting and Getting the Transplant Call
Our Shared Journey
I remember it like it was yesterday: sitting in a doctor's office, 13 years old, listening to the doctor tell my brother what cystic fibrosis was and the challenges that awaited him. He was 16 and newly diagnosed. My parents wanted our whole family there to support him, so I went -- a young girl, struggling to grasp what CF was and what in the world it meant for my brother.
And then it happened.
Despite the fact that we were still waiting for my own test results to come back, the doctor looked across the table and very nonchalantly said, “Yeah, she's got it too.”
I sat with a blank stare, unable to fully grasp what this meant or the fact that my entire world was about to change. My mother excused herself from the room, no doubt to let a few tears out in private. My father began to ask the doctor how he could possibly know just by looking at me. But sure enough, a month later my results came in and the doctor was right.
In the matter of a few short months, my family was redefined from having two seemingly normal kids to two CF patients -- and boy, did it change everything.
At the time of my diagnosis, I had just started to experience health problems. I was sick all the time, always on antibiotics and constantly being shuffled from one doctor to another. But once I knew that I had CF, my days began to revolve around my disease, and to say it was an adjustment is a gross understatement. My parents were ALWAYS concerned about where I was, who I was with and how I was feeling.
Due to my late diagnosis, the burden was not on my parents to ensure I grew up with good habits, but on me to form them. My parents did everything they could to help me, but it largely fell on me to make sure that I was taking care of myself. It was a daily struggle for me to slow down and do the therapies, and I quickly learned the price I would pay if I wasn't diligent.
In addition to my new treatment burden, I also began to realize how difficult it was to cope with a disease that no one understood. My friends never truly realized that I was different and couldn't understand why things had changed. But the fact remained that the older I got, the more I became different from them. I began to have to sacrifice things for my health that other kids my age didn't, such as quitting sports or being homeschooled because I was in and out of the hospital.
Looking back, the hardest part was wanting to erase my entire experience with CF and go back to the way it was. I so desperately wanted to go back to being “normal.” I knew what it was like to not live with this disease -- to be healthy and worry-free -- and understood what it felt like to not live with the impending fear of my next hospital visit or which intravenous (IV) antibiotics I would be put on.
Despite these challenges, I know that everything I've gone through over the past 14 years since my diagnosis has made me stronger than I ever thought I could be. I no longer daydream about what my life would have been like had I not had CF. It's taken me a while to get here, but now when I picture my life without this disease, I picture my future.
Adult with CF
Jordan was born with cystic fibrosis, but was diagnosed at the age of 13 when her health problems began to surface. Despite this, she attended the University of Arkansas where she graduated with a B.A in advertising and public relations. She has since lived in Dallas, Nashville, Tenn., and Little Rock, Ark. Jordan currently lives in Fayetteville, Ark., where she manages Walmart’s digital media trade desk. She is an advocate for the people living with this disease and actively involved in the Arkansas Chapter.
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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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