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.
Although social cues dictate that we ask others how they are feeling when they're sick, this question is a lot more complicated when you have a chronic disease like cystic fibrosis.
May 24, 2018
Highlights from the 2017 CF Foundation Patient Registry
How Connecting Online With People With CF Changed My Life
I recently found myself in a situation that many CFers can probably relate to: answering the dreaded question, “How are you feeling today? Better?”
Although I am so fortunate to have friends, family, co-workers, and acquaintances that genuinely want to know the status of my health when they see or hear I'm ill, this question can get rather complicated. After all, what happens when the “insignificant
cold” turns into more?
Over the past six weeks, I would say that no less than 3-5 people a day -- aside from doctors and nurses -- have asked me how I am feeling. While this is a kind and sweet gesture that I assume holds zero ill will, it puts me in an uncomfortable
For the last six weeks, I was -- for the most part -- getting worse, not better. So, with each inquiry I would try to be cheerful and honest by saying, “Not quite over it yet!” or “I'm working on getting better!” or “I got some new meds. I hope they kick
in soon!” With those I'm closest to I'd say, “I actually feel worse today.” or “I think I might need to be hospitalized.”
Whether intentional or unintentional, there is a cultural expectation when someone asks how you are doing to respond with, “Fine” or “Good, how are you?” But when you are sick, the response is less obvious.
I truly want to be better and I would love to tell you that I'm getting over it and feeling great, and that I plan on being able to get back into the real world very soon. Unfortunately, that isn't the case for many of us with CF. The chronic nature of
this and many other diseases means that sometimes I spend up to half of the year in some stage of illness or recovery.
When it comes to having a disease like CF, social cues can be tiresome. How much should I share? I can't tell everyone my cold turned into a lung infection that led to a (luckily, only) eight-day hospital stay; I'm better, but I'm not 100% and am still
having lingering symptoms that make each day a little more difficult.
I hope I can draw some attention to the unwitting urge that sickies like myself feel to either lie or sugar-coat an already exhausting situation. Although I know I'm beyond blessed and truly do not want to sound ungrateful, I hope I can make the following
Next time you hear someone is ill, just keep it to, “I hear you're not feeling well. I hope you get better soon!” Or even, “I'm thinking of you! Is there anything you need?” We appreciate the concern, and I know that I, for one, would
Adult with CF
Kelsey was diagnosed with CF at age 10. She is a proud graduate of the University of Northern Iowa, with a master's degree in nonprofit administration. She now works full-time as a Member Programs Manager at a not-for-profit life insurance organization. Kelsey has chaired the Great Strides walk in the Iowa City/Cedar Rapids area for six years and will serve as the Iowa Great Strides Ambassador this year. In her spare time, she volunteers with a variety of local organizations. She loves chocolate, yoga, baking, and watching "Parks and Recreation." Kelsey lives in Iowa with her husband and two dogs. You can contact Kelsey at firstname.lastname@example.org.
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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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