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.
I may not have chosen to have cystic fibrosis, but I did get to choose my outlook on life and -- ultimately -- my perspective.
April 13, 2017
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Because of the struggles I've faced with cystic fibrosis, I feel that I sometimes tend to have a perspective on life unlike most. I see the little moments as huge ones, I celebrate the smallest of wins, and I embrace every minor detail that life has to offer. I do my best to see the opportunity in a challenge and bright light waiting at the end of what can feel like a dark tunnel. And, although most might think I have this outlook despite CF, the reality is that I have this outlook because of CF.
Don't get me wrong, it's not always rainbows and butterflies. I've been in those moments where it seems I am never going to leave the hospital bed or stop spending my days at the doctor's office -- when I am just plain sick and tired of being sick and tired. It's normal and I felt totally OK to break down and truly have those awful moments. But, when that horrible feeling passes (as it always does), there's an unbelievable happiness and appreciation that comes over me. And in those times, despite the heartache I have just faced and -- inevitably -- will face again, I appreciate all that life has given me.
There's a saying that goes something like, “You don't know light until you've been in the dark.” I completely understand this. I'm not sure I would have ever been able to truly appreciate all life has to offer if I hadn't ever felt like there was a possibility of it being taken away from me.
I also have been uniquely blessed to experience an overwhelming amount of support. Although my family has made the most sacrifices of anyone, I have felt loved and supported by entire communities. I've been able to get involved in the Foundation and it has had an undying effect on my outlook.
being a part of the Foundation's events is a surreal experience, every time. I have a hard time putting into words just how humbling it is to see a gathering of so many people -- some I know, most I don't -- give so much time and attention to a cause that directly impacts my everyday life.
Seeing the hard work that so many put into the gatherings and just how much they give of themselves is truly unbelievable. It's unlike any emotion I've ever felt, full of love and appreciation. I have some of the most treasured moments of my life at these events.
My family also has been blessed to be surrounded by amazing people that will not stop until there is a cure. Most people don't dream of feeling an ounce of the love and compassion I've been able to experience in my lifetime from so many close friends. It's hard to imagine, but I will never be able to thank or do enough for those who have given so much to my family and me. There really is nothing more special than seeing so many people sacrifice so much time and time again.
I've told myself my whole life that I never wanted to let CF define me, and it hasn't. But, I can't deny that it has played a major role is shaping me into the woman I am today. And -- for that -- I am oh so grateful. I can't say how I would feel with a different family, no support, or no CF Foundation. But I do know that I get to choose my outlook based on my experience -- I see the good despite the bad and have faith there is light waiting even in the darkest of times.
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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