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.
Finding out I had a terminal illness my junior year of high school was a life change I was not prepared for. And as my life and relationships change, I'm learning that the journey to acceptance never ends.
July 27, 2015
Thanks for the Uncharted Territory
Event Recap: Southern California's Pipeline to a Cure
I remember that March day vividly. My mom didn't tell me why we were going to the hospital until after we were there. Probably because just a few weeks earlier I'd read a book in which a character had symptoms just like mine. That was when I realized the past two years of mysterious health problems might be something serious.
The second the sweat test started, I got an ominous feeling in the pit of my stomach. All we could do was go home and wait.
When the phone rang a few hours later, I tentatively walked across the hall and peeked into my mom's room. She was sitting on the bed, phone to her ear, saying little. But I looked at her and just knew: The test was positive. I had cystic fibrosis.
Finding out I had a terminal illness my junior year of high school was a life change none of my family or I was prepared for. So we met with doctors, learned about the new medications I'd be taking, and tried as best we could to live our lives like we did before, just with a few hours of daily treatments thrown in.
A little more than a year later I headed off to college. I moved six hours away from home, to a place where I didn't know a single person. I wasn't shy about having CF, but it sure was easy to ignore the gravity of my still-new situation. Hanging out with friends was far more appealing than strapping on my VEST and inhaling pulmozyme, and for the next few years I got really comfortable with denial.
2006: Chicago with some of my sorority sisters.
Somewhere along the way I realized that ignoring my treatments wasn't doing me any good. Time and maturity led me to face this (still) new reality. I had CF, and it wasn't going anywhere. I either had to start taking care of myself, or let it get the best of me.
Which brings us to today. Last September I turned 30 and, to be honest, it's been my hardest year yet. For a long time I thought I had accepted this new life. It felt like I was doing everything I could to straddle the line of living with it but not letting it overtake me. But as my life and relationships change, I'm learning that the journey to acceptance never ends.
The hardest part continues to be managing the disease as an adult. It takes its toll, both physically and emotionally. It doesn't matter who you are; as people get older, life gets more complicated. When you throw in a life-threatening illness, the complications seem to grow exponentially. It's a daily struggle to live my life outside of my disease -- to keep it from seeping into each moment of my day.
My biggest fear is that it's changing me. The loneliness…the fear…the “what ifs.” I'm scared they're slowly chipping away at who I am.
Yet in many ways, having cystic fibrosis has helped me become who I am. It's made me better, stronger and more empathetic. I wouldn't change any of that. But there's a HUGE part of my life that very few people are able to understand. With cystic fibrosis, there's no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash and scary thoughts to try to ignore.
It's all too easy to get dragged down by the sadness that surrounds having cystic fibrosis. But I know indulging in my fears doesn't help. So I struggle to pull myself out, to replace the negative thoughts with hopeful ones. And, as always, I do my best with each day I'm blessed to wake up to. Reminding myself to take one step at a time, even if they're only baby steps.
Adult with CF
Katharine was diagnosed with cystic fibrosis at the age of 16. A graduate of Denison University with a degree in English, she now has a successful career in communications. As a CF advocate, Katharine speaks at events sharing her story, serves on the CF Foundation’s Adult Advisory Council and is a board member for the Maryland CFF chapter. For her efforts as an advocate and fundraiser, Katharine was named one of the “Top 10 to Watch Under 30” by the Baltimore Sun and a Maryland’s Finest honoree. In her free time, Katharine enjoys reading, traveling with her husband Mike and eating locally. You can find Katharine at From A to Pink and The Bookly Club. Follow @katharinescriv on Twitter and @katharinescriv on Instagram.
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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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